Gifts

Down Syndrome Awareness - two years later

2011-10-14T06:59:00.000-05:00

Here we are; a year after I wrote the story. I am sitting in the hospital next to Tomas' crib while he sleeps. He has been inpatient for 7 days in order to have some procedures done and some tests run. This makes 4 hospital stays in 4 months for a total of 20 admissions in his 32 months of life. Tomas has had a rough few months; 2 line infections, one that was pretty severe, degenerating gut motility, progressive liver damage from the tpn, re-discovery of the ASD in his heart, a recommendation from one of his specialists that he be evaluated for a mitochondiral disorder, chronic neutropenia which prompted another bone marrow biopsy and some neutrophil testing, and another fasting study to get to the bottom of the metabolic disease causing his hypoglecemia. The goal of this hospital stay was to be able to safely reduce the number of hours his TPN runs in a day, in the hopes that we can slow the liver disease and possibly reverse it. In order to do this he has to be able to fast as he can not take in enough volume by tube feedings anymore to reliably count on enteral feeds as a source of glucose. Before admit he was fasting 4 hours and we are going home tomorrow with a plan for fasting 6 hours.
What is glorious about that? Grand, beautiful, splendid? Nothing. I miss my girls, I miss my husband, I haven't unpacked my house, I know hospital life inside and out. I have minor anxiety attacks when I see a NICU unit, and had a full fledged PTSD episode when Tomas was sent to ICU even though it was just for some testing and he was healthy. How is it that I can laugh away an afternoon in a windowless room, hold my moaning, near comatose hypoglycemic child in the evening and then smile again with the sunrise? The answer is so easy.
Tomas came into this life with no guarantees. I never had an expectation that he would live a long healthy life. I just needed to get past the first 3 days and the first surgery. Then his liver stopped working when he was a week old and again my husband and I just waited. Next came the blue spells which left me thinking that this time for sure I was holding my blue, limp, dead baby. After that came that horrible, terrible, angelic night that he coded with an angel by his crib. Many more life threathening events followed, waxing and waning with his given health status, up until I got a fresh reminder in August with the sepsis and another blue spell. For my girls I fully expect that barring a tragic accident they will grow up and grow old; it is just not the same for Tomas. I have no idea if an acute illness will kill him, a chronic illness will kill him, or barring any tragic accidents he will grow up and grow old.
Point being that every sunrise is something to give thanks for, even the ones that happen here in the hospital. Each day is a gift, filled with gratitude for the continued existence of my son, my daughters, my spouse, my life. I do not ignore the difficulties my family faces, or sweep them aside, or make light of them - I couldn't if I wanted to as they encompass every aspect of it. Everything - right down to needing toilet paper but being unable to just run to the grocery store for it - that kind of everything. Instead I wrap them around me, build them into my being and then take a step. Somedays it is just one step, getting out of bed, those are usually the days after I've been notified of something else gone wrong. Other days, the glorious ones, the ones that I flashback to at the crackle of a leaf, or the scent of the ocean, or the warm sun hitting my cheek, those days my God I swear I can soar. Most days fall in between; the drudgery of day to day living. But all those days snap together to make the picture I see. And the picure is good and happy and at peace in this moment.

Recap

2011-08-14T07:47:00.000-05:00

Friday 8/5 - We close on our home in NY

Saturday 8/5 - While cleaning the house in order to move in the next day, Tomas gets grumpy, spikes a temp, and has trouble moving air well. Call 911 and are brought to local ER.

Saturday evening - Unable to find an easy solution to his issues we are transported down to New York Presbyterian. 2 doses of morphine need to control his pain. IV antibiotics started.

Saturday to Sunday 8/6 - In ER at NYP testing everything imaginable, morphine as needed, bowel surgery likely. Rest of family moves out of hotel into house.

Sunday evening - Moved up to room under GI care. Round the clock pain meds and antibiotics, antifungals added.

Monday 8/7 - perking up a bit, sitting up and watching VeggieTales. Line infection comes back positive for bacteria, putting bowel surgery on back burner as it is not the source of Tomas' troubles. Mike and girls come to visit.

Tuesday 8/9 - Line infection not clearing but under control, possibility of surgery to remove port.

Wednesday 8/10 - Moving truck unloads at home. Line infection now showing yeast as well, port has to be removed. Breakthrough fevers and pain, sliding downhill fast.

Thursday 8/11 - Unresponsive and lethargic all day. White blood cell counts and platelets are very low. Surgery to remove port.

Friday 8/12 - Worsening of condition, everyone worried, tests ordered to look for hidden yeast in the body. Heart and kidneys are clear but the eye doctor found swelling of the fluid around the brain, putting pressure on his occular nerve. An emergency CT scan of the brain is orderd. No masses found. He is very, very sick.

Saturday 8/13 - My anniversary. Day surgery ordered open, OR nurses called in from home, and the lumbar puncture is done. He is still so tuned out to the world. Initial fluid tests show no meningitis but spinal fluid pressure is too high.

Saturday night - A new pain med is ordered that is also a strong anti-inflammitory and Tomas perks up. He sits up in his crib, sings along to Veggietales and gives me little smiles. And then he sleeps, almost all night, only waking twice. Such a blessing.

Sunday 8/14 - My husband is coming down for the day and I will go see my house for the first time since we have moved in.

Tomas has 4 issues going on:
1. The bacterial and fungal infections in his blood - they are being treated with IV antibiotics and antifungals. The bacterial infection is cleared and he has been moved to maintenence antibiotics on that, yeast is still growing, but slower than before so we are headed in the right direction. He will need this IV therapy for weeks, but it can be continued at home.
2. GI issues - We have intermittently tried to feed into his J but so far no luck, even at just 7 mls/h (a little more than a teaspoon an hour). There is also the abnormal section of bowel and he will need a new central line placed before we can go home.
3. Blood counts - Hematology hasn't weighed in yet, but most likely it is suppression in the bone marrow due to being so ill, and his counts should climb once he starts feeling better.
4. Due to the increased pressure in his skull and the increased pressure in his spinal cord fluid Neuro is being brought in. So far all we know is there are no blatant masses and meningitis is unlikely (there is still a chance the fluid could grow something).

He is on a ton of meds. Besides his regular ones, all the infection therapy, he is also getting constant anti-nausea and antiinflammitory meds. He has two IVs (one in each hand), and so far has only blown one (for a total of 3 sticks). That is great for him.
The best guess anyone can give is he will be here for another week, or more depending on what neuro finds and if the spinal fluid growths anything.
As always, the community of people surrounding us has lifted and cared for my family. Family, friends, and strangers contribute a lot or a little to make something beautiful happen. It is one of the gifts that Tomas brings, that any sick little one brings. The number of kindnesses that would go undone without these least of us among us would make for a much darker world. Thank you.

I'm not an inspiration, I'm a mom!

2011-08-11T07:45:00.001-05:00

It has been a rough week, a really, really rough week. Way to many high stress things going on at the same time, and there is not an early end in sight. Tomas is not well, and this line needs to come out ASAP so he can get better.

But something bigger is on my mind this morning. So many of you have said such lovely things to me ABOUT me.

How do you do it? I could never survive. You're amazing. You're such an inspiration.

Well listen up - STOP IT! I am nothing more than you, nothing better than you. I am exactly what you would be if you were here.

Do my words inspire you? Thank you, but they are not mine. They are pulled from the collective body of knowledge of men, from the great conversations that have taken place through history. Great books, great stories, great speeches all jumbled together in my brain; words rolling and bumping around waiting to be pulled at the appropriate time.

Does my strength inspire you? Hah, it's SO not mine. It is pulled from the Most Holy Trinity, the vastness of space and the awesomness of creation. It is a limitless supply and I go back for more many, many, many times.
Does my faith inspire you? This one is harder, because it was a gift given at a horrible price. Formed from watching people I care about trudge through misery. Those who had faith made it through to share laughter and radiate joy despite the pain. Those who did not hold tight carry with them a great pain from which they find no relief. Early on I had to choose which path I would want to look back upon at the end of my days.

To any of you who think you could not do this, that you would collapse in a corner, Just ask yourself one question. Are you a mother?
The question isn't - do you have a child? It is - are you a mother? Every time your child frustrates you, or angers you, or causes you pain, do you choose to walk towards the problem rather than away? Do you make mistakes and get things wrong, but then go back and apologize? Then you would make it through a trial like this as well. You would rise and rally beyond anything you ever thought yourself capable of, because your child needed you to.
Because it is not about how high the bar is set, it is about whether or not you choose to jump it.

This little piggie

2011-08-08T08:04:00.001-05:00

Tomas is admitted to the hospital again, but for something beyond anything he has ever dealt with before. Intense attacks of abdominal pain. After 2 ambulance rides, 2 ERs, and 30 hours he was finally moved up to a room and allowed to rest.
His toes are still this morning. He is sleeping and his toes are as still and peaceful as the rest of him. I prayed for quiet toes many times over the last 2 days. Just recalling the vision of him in pain makes my throat shut, my heart race, and my breaths come with effort. Watching was unbearable. It happened 3 times, each one worse than the last, and longer than the last, requiring more morphine than the last. He would roll to his side and bend his body like a tight "V", rigid and trembling with pain. No crying, just a grunting moan, his hands clasped tightly together and his eyes shut. His eyes were not shut tight which I find comfort in. I pray it means he wasn't there, that he escaped, that while his body raged his soul was safe in the extracorporeal world of The One who loves him more.
While I laid my head next to his back and rubbed his tremoring body and waited for the morphine to work I found myself staring intently at his toes. His feet would shake and his toes would spasm independently, his whole body was in pain, and I realized that Our Lady must have seen Jesus' toes like this too. That she watched his toes spasm, and I couldn't decide what was the greater burden; the dying for the sins of the world, or the watching of your son's toes dying for the sins of the world. To not turn away, not collapse, but to watch and smile gently when your child's eyes met yours in pain; to have that vision burned in front of your own eyes forever is a burden most heavy and enigmatic. Somehow, this great weight strengthens me. It is so heavy there is no room for the petty things, it is so rough it scrapes the meanness and harshness away. It is The Burden of Perspective and it is what the Lord meant. Only through Him can the yoke be tightened and still feel easy, and only through Him can the burden be loaded and still feel light.

Today doctors will round, and tests will be run, and plans will be made. Tomas is on complete gut rest so with any luck the only thing his toes will be doing are eating roast beef and going to market.

Tests

2011-07-29T07:17:00.000-05:00

We have been in our 1 bedroom hotel suite (with a tiny kitchen) for 34 days. 5 people, 2 dogs, 27 pounds of Special Needs eqipment and 34 days. 'nough said about that! Delay after delay keeps popping up on the closing of our NY house. We were supposed to close on the 15th, at this point the earliest will be the middle of next week.
Our belongings have been trucked up from storage in TX only to be moved to a storage in CT; just waiting on an ok to unload. My husband may have an aneurysm soon, he took off work last Fri. to do a walk through on the house. It only took the morning but he was so stressed he just took a long weekend. That NEVER happens. Having a super stressed out husband hanging around you for 2 days, let alone 3, is the opposite of fun.
Luckily, I have an amazing friend here who is keeping me sane, and letting me use her home as needed when our space gets too cramped. I also met some moms from our new homeschool group last night and everyone was very friendly, so super glad about that.

I knew moving to NY and starting over with new doctors would mean lots of tests for Tomas. He has seen endocrinology, GI, ENT, and Hem/Onc so far.
The endocrine doctor took away his lovely synthroid compund because she says it is not stable and they don't use it at the hospital. His thyroid levels were off otherwise I may have fought her over it, but instead I am back to crushing the pill and chasing the mixture of water/med all over the bowl with a syringe to make sure I have drawn it all up. I love me a compounded med with a syringe top bottle! Sigh...She is waiting on his medical records to come up from Dallas to proceed with the Growth hormone/hypoglycemia testing, but for now is sticking to the strict no fasting orders for him.
GI: This could be it's own post so I'll try to summarize.He ordered a tube study, barium enema, upper GI, endoscopy and weekly/monthly lab work. The tube study showed his GJ perfectly placed (in case the bile/formula reflux from the J into the G was due to the tube being out of place). Sorry guy - no easy answer there. The barium enema showed no microcolon - again no answer. Yesterday Tomas had the upper GI with small bowel follow through. The radiologist puts barium into the stomach and then takes x-rays at timed intervals afterwards to see how quickly it moves through the GI tract into the colon. After 5 hours it was still in his stomach. Score! Hoping for some good info to come out of that one.
ENT: He ordered a sleep study, swallow study, laryngoscopy, and bronchoscopy. He doesn't think Tomas' desats are due to true obstructive sleep apnea, he wants to look for a laryngeal cleft. Also, one of Tomas' ear tubes is out so the dr. will clean out both ears while he is under, do the hearing test, and then replace them. I'm curious to see where his hearing is without the tubes in. He did tell me that any vagus nerve damage that is causing the GI issues would not be affecting Tomas' swallow. He still has so much difficulty swallowing without aspirating. That's where the cleft comes in and possibly that right subclavian artery that is out of place.
Hem/Onc: She just reminded me of the risk of TMD babies transistioning to AML by the age of 5 (Tomas has enough friends who have gone through this that it is always in my mind). His neutropenia requires more testing so she tagged on to the GI's lab orders. Since his platelet count is usually normal and his platelet function is always normal she feels like the petechia are most likely due to weak blood vessels. Not sure what the means for Tomas. I was absorbing too much other info and will have to ask at the next visit. At the end of the appt. she brought in her nurse to get blood from Tomas for labs. This is almost comical. He has a port - it should be a breeze to get blood. But blood return is not my friend. The nurse was fantastic; she hooked the syringe up to his needle but alas, no blood return. Then she started cajoling Tomas into making sounds which would cause him to inhale and exhale deeper giving her just a drop of blood every time he did. For about 15 minutes she worked with him to get enough blood so she didn't have to stick him. The doctor was undecided about what to do about the port. Since we could at some point get blood from it, the problem could just be positional with how the needle is placed in the port, but because this happens even after needle changes, she also wants to do an x-ray and dye study to see if that is definitely the case. I'm a little aprehensive about that because it could mean surgery to replace the port. Not a huge surgery, but still.

Tomas is doing ok. A couble of small antics but on the whole the TPN is working and keeping him home. He was dehydrated on last weeks labs due to an increase in G drainage, so the volume on his tpn was increased. A few months ago that would have meant an admit, but now he is stable and hydrated, allowing me to not stress too much over the continuing GI issues.

My next job will be

2011-06-25T17:04:00.000-05:00

An air traffic controller at Dulles International Airport, and it will feel like being on spring break.
The logistical mountain that needed to be coordinated and moved to get Tomas to New York was overwhelming.
BUT, we are here, it is done, and it went off without a hitch. He saw his new pediatrician the day after we got here, that pedi drew the TPN labs, and the new infusion DME has been in contact with the dr. and me, a nurse from the new skilled nursing company came out this morning and changed his port needle, which was overnighted to my hotel room by the old infusion DME along with enough TPN to get us through the new lab results and new written orders from the new doctor. Tomas' first specialist appointment is on July 7th, with 10 more to follow in the next 3 months.
I am so grateful for the TPN because I am pretty sure he is in the middle of another shutdown, and is barely tolerating the tiny drip of J enteral feeds we have running. I am certain he would be in the hospital, but instead he is here with his family and gaining weight every day. It is a gift, short and simple.
We drove here, it took 4 days because we didn't push the kids to go 10+ hours a day. I loved watching my girls faces as the hot, drought ridden, cracked earth landscape around north TX gave way to the green rolling hills of TN. Then the woods got thicker and the people got sparser as we headed through northern VA, NJ and finally into NY. I grew up here, but my kids have only known the flat pancake that is FL, and the small hills of TX. Climbing the large hills of the Hudson Valley and having them look out the car window and look DOWN on the villages below took their breath away, and that gave me such pleasure, and such admiration for the creator and the variety he bestowed upon us. In all things there is this incredible variety, a newness waiting for the next newcomer to discover.
I wonder what this new place will make of the variety my family brings with us. The local newspaper had an ad for an OB/GYN office that headlined with "Genetic Counseling; Nuchal Translucency Screening; Choronic Villus Sampling; and Genetic Amniocentisis". What will this tiny part of the world make of my boy who "failed" all these tests? We left the relative safety of a very conservative area and once again God is holding His hand tight to His chest.
How much more I would prefer to offer my faith up as a single gift, on a silver platter, one time, and be done with it. That is not my path though, my path is the Hansel and Gretel path. The one where God leaves little breadcrumbs for me to find my way, and while I am aware when I find a large enough crumb to propel me forward I shudder at the disheartening thought of how many smaller ones I have missed. So I wait, because God knows I am dense, and stubborn, and prideful, and He knows that every once in a while I need a whole stinkin' loaf of bread to find my way.

The Long Hello

2011-06-12T22:37:00.000-05:00

I have been debating about whether to try to catch up on the blog or just let it go, but in the end I decided I missed it too much. That leaves me with a tremendous amount of catch up, and trying to sum up the last few months in a few short paragraphs.
Tomas began a downward GI slide in March. He was not tolerating his J feeds and would retch and back arch and stomach crunch and cry to the point where he needed to be hospitalized in order to run IV fluids and give his gut a break.
The episodes became closer and closer together and by early June he had been hospitalized 6 times and spent a total of 45 days in the hospital. It got to the point he couldn't be home for even a week. As soon as we started his feeds back up within the next few days the same things started happening.
Finally, in late May the doctors switched gears from trying to figure out what was wrong (I'll get to that in a minute) to trying to find a way for me to keep him home. An IVAD (he got the under the skin kind) and I was given protocol on when to switch from J feeds to IV fluids and how long he could stay on fluids before he would need to be admitted. That worked for about 2 weeks, and then I couldn't get him off fluids. His gut just didn't want to work. Plus, he continued to lose weight at an alarming rate. He went from 25lbs 13oz to 22lbs 2oz in 3 months.
After a roundtable discussion with Tomas' GI, pediatrician, nutritionist, and myself, the decision was made to place him on TPN. So one more trip to the hospital, another week long stay, another protocol for TPN labs and weight checks, and he has been home for 10 days now. Doesn't seem like much but it is the longest he has been home since early April.
It is going well, a few ER runs for clotted lines, and phone calls for pump issues, but he is gaining weight, and looks so much healthier. He still has a very slow J feed running to prevent cell atrophy and to help mitigate the negative health issues that come with prolonged TPN usage.
Well, what the heck is wrong with him anyway? In all the hospital stays he has had a different attending GI every time (they do 2 week rotations at our children's hospital). Each one had a different theory, the first was he had a metabolic disorder, but metabolics said no. The second was he was on the wrong formula, 3 formulas later and that was kicked aside. Another thought he needed different motility agents, after 4 different meds that was given up. The running theory at this point is that his Vagus nerve was damaged during the last fundo surgery and that the pacemaker area of the stomach has been affected. That area controls the impulse to contract the stomach as well as the small intestines. If that turns out to be the case then there are not many options available, keep him on TPN, or have a stomach pacemaker implanted. There are only a few doctors in the country that do it and so far the youngest patient I've found is 5. So we have a ways to go for that. But first someone would need to prove that is what's wrong. The medical community in Dallas is unable to do that. They are out of tests, and ideas, and are just working in a palliative care mode. Good thing we are moving to NY.
Yes, we sold our house in only 14 days. I was in the hospital when the offer came in. We have a house picked out in NY that is beautiful and are waiting to get to contract on it. The movers come tomorrow. They will be packing for 3 days and loading for 2, and on Friday we say goodbye to this house! It happened so fast we are still spinning. A few kinks need to be worked out with both sets of contracts but I am keeping faith it will all work out. The logistics of moving Tomas have qualified me to be an air traffic controller x2. That is it in a nutshell. Actually, that is definitely the shelled out version. In the future look for the fluff. An ambulance ride, a nurse's tale, and a shopping cart are all coming to mind at the moment.
If you are still out there and still reading :God bless.

Stuck in Traffic

2011-04-15T09:50:00.000-05:00

We had Tomas' appt. with the new GI and it was a good one. He is a man who likes the puzzle kids, and he and Tomas' oncologist share a few of the more challenging kids at the hospital, so I really think it will be a good team for him.

Another huge plus is that this GI nurse actually calls you back, and has been tremendous at keeping contact going between the doctor and myself during the last week. Tomas is having slow to no motility again and I and his home health nurse have been sidewinding our way through trying to keep him home. It has always been, "Well, do what you can for him at home, and when you can no longer feed him enough to keep his sugars stable or he gets dehydrated bring him in." So frustrating.

He had 4 fabulous days last week where he had zero bile output and he tolerated his feeds great. That ended on Sunday and has been progressively sliding downhill, to the point where yesterday was an on the fence kind of day. Problem is, Mike is gone, and I KNOW if I bring him to ER he will get admitted. So we struggle on here, hoping that the next day is better than the last. As of right now he hasn't hit his calorie goal since Sunday, but I am doing my best to use a mix of pedialyte and formula to keep his GI tract running. Oh, and I need to add that the little stinker is now smart enough and coordinated enough to yank off his extension set. He knows it hurts when he eats, so he just wiggles and wiggles it until it comes loose. He has managed to free himself a few times now and make giant messes!

He had a sleep study done on Friday and I should have the results at the next pulm appt. I hope they were able to get some good data as I don't really know how well people sleep at those things. I did find my miracle - make your baby sleep - cure though. It is a farrell bag. It hooks up to his feeding set and is a way for the stomach (or in his case intestines) to release gas pressure. Basically, the bag is an outlet for the tube set, if the pressure inside is greater than the pressure in the bag, then the formula will flow up into the farrell bag until the pressure equalizes, then slowly drips back in. We tried it when he was an infant but it has so much tubing he was never strong enough to push it all the way through. Now, it is amazing to see the difference in how he sleeps at night. If I leave the bag open he sleeps like a normal kid. Falls asleep, moves a bit in the night, but stays asleep without a sound. The problem is that he is not getting all his food, so if too much starts to back into the bag I have to clamp it shut so he can eat and not become hypoglycemic. He does not like this and within 30 minutes of the clamp is moaning and whining in his sleep just like before. So we do the farrell dance through the night, but all in all, he is sleeping so much better.

Due to all the bile output, we are having to monitor his electrolytes closely. Last Monday his sodium/potassium/chloride were low, and they were still low on Wednesday. This Tuesday we had them drawn again and the only one still low was potassium. This was after the good 4 days and before yesterday though so I am thinking his next check (Monday) won't be as pretty. Yesterday was tough. The girls had a field trip.

It sounds so simple doesn't it? It's not, and it has nothing to with the amount of gear or prep involved. That is not it at all. It is the absolute lack of consistency in Tomas' state of being. It is never knowing if he will make it through. I can't say if it is the GI problems or the hypoglycemia that are more the culprit here. If he could eat fine then we wouldn't have issues, but then again, if he wasn't so severely hypoglycemic, it wouldn't be as dire a situation when he is not tolerating his feeds. You and I, and Victoria and Olivia, and most other people on the planet can skip a meal. You eat breakfast, and for whatever reason something comes up and you miss lunch. Before you know it, you look at your watch and it has been 8 hours since you ate. Maybe you had breakfast at 7, and now it's 3 and you're starving. You eat and all is well. Not so. He can't do it, if he were to go 8 hours or 7 or 6 or even 5 without food there is a very, very good chance he'd be in a coma. It is the single most difficult thing we are dealing with right now because it means he HAS to go to the hospital when he can't eat.

Back to yesterday, It started out pretty darned good. It was a progressive field trip through historical markers in a nearby town. The first two stops were perfect, he was happy and playful and just regular old Tomas. It was early, and not time for his feeds to start. The third, and final stop was the long one, were we would spend the rest of the day, so his nurse got him all hooked up and everything running and sat with him while I bounced back and forth between the two girls' groups. A little into it things went downhill and I was calling the doctor to tell him if Tomas didn't wake up from his nap better then when he went to sleep I would be bringing him into Dallas.

Their plan was to try to get him through to his already scheduled surgery appt. in just a few hours and see if the surgeon had any ideas on what was going on with the bile output. Tomas did wake up a bit better and we did make it to the appt. Unfortunately, the surgeon didn't have anything to add, and it was more of the same;. bring him to ER when it gets bad enough. I asked if there were any tests we could run to see what was causing the bile reflux, or if it could be fixed with any different motility meds. Nope and nope. Just a long talk on how dangerous it would be to do any kind of surgery on his bowels given what they had already been through, and to call him any time. Thanks; and we walked out just as close to an admitting as we went in.

As we were leaving the hospital pavillion I thought I'd pop into the blood disorders clinic and see if his hematologist was there. I've been mildly worried since Tomas' pathology report came in from his last bone marrow biopsy; not too much because I figured his doctor would've called if anything terrible was going on. But I still had some questions and had been playing phone tag with the dr. for a few days. Luckily, she was in and close to finishing so we hung out in the waiting room for a few minutes. She came out, saw his bile drainage, and pretty much became as stressed out as I was over the whole thing. She spent a very long time talking with me and going over EVERYTHING that has been happening with Tomas in the last month. She wants a CT of the abdomen and brain (for unrelated autonomic issues). When we left she was going to call the GI and then call me back today.

That means that within an hours time I had two wildly different opinions on what could be done for my son and on how to proceed with his care and maintenance. This is the stuff that drives special needs' mommies insane! Truely, who do you listen to? In this case it was easy, since it was do nothing and hope it gets better or let's do a CT and see what we can see. But it is not always that clear cut a choice.

The bright and shining spot not to be lost in the mist of all this GI junk is that his bone marrow was normal! Even though he has blasts they are the "friendly" kind and she is not concerened at all by his report. That made yesterday get a whole lot better.

Last week when Tomas and I were driving home form the new GI appt. it was rush hour and we were stuck in traffic the whole way out of Dallas. It very much struck me that caring for him and navigating the medical world is very much the same. Slowly, so so slowly, we trudge forward. Every once in a while we switch lanes hoping to move at a faster pace, all the while watching those around us do the same exact thing. But the most amazing thing happened while I was stuck mentally and physically in traffic on Wednesday. Tomas happened. He was fascinated by the cars all around him. Every time one would pass by the window he would kick and scream with a JOY that almost popped him out of his carseat; and I laughed. Right there in the middle of six lanes of traffic moving at a snails pace, we laughed and laughed and laughed. A tuck would roll up and he would explode in shouts of sheer delight. Oh my word how much fun we had. And thats it really, that's the big fat secret to our lives. He brings us joy beyond measure.

Where the heck have I been?

2011-04-05T23:21:00.000-05:00

Well, first off, thanks for asking. Makes a girl feel loved, lol.

Let's see. Mostly doctor's appts, as usual. Only now we have the whole buying/selling/moving thing thrown in. My husband came home on Sat. and we have been working hard to get the house ready to list. Sprucing up the outside and shoveling out my middle child's bedroom come to mind. Outside is done, bedroom is still a work in progress. We are trying to list the house this week though so hope to get it done soon.

Of course, Tomas has not made this easy. He got out of the hospital on the 18th and started running one of his cyclic fevers on the 23rd, prefectly timed so that I would have to cancel his swallow study (I think he knew).

A pulmonolgy appt. for all 3 brought 7 new tests smattered among the little darlings (with bad lung genes).

Last week Tomas' nurse fell and sprained/tore tendons in her ankle. Replacement nurse came the next day, but then missed the next two due to a doctor's appt. and an ER visit on her part for a severe sinus infection. Do I want another replacement nurse? Um, no thanks, they are dropping like flies. Regular nurse will be back next week.

This week brought a pedi visit for that pesky fever. It doesn't get over 100.2, but has been around for almost 2 weeks now. A failed cath attempt and blood draw attempt brought a trip to the children's hospital for round two of torture the baby, but it worked. Still waiting on culture results.

Today was a waste of time and money at a dermatology appt. for him. Only thing worth even mentioning is that Tomas' cold sore isn't your typical cold sore (not really worth mentioning as I could have had the doctor pay me to tell him that) and is the kind you see in chronically ill kids. Smack me on the forehead, I didn't see that one coming.

Tomorrow brings a semi-big appt. with a new GI. It is the attending from his last hospital stay. The doctor was fabulous at the hospital and I hope that trend continues as Tomas has been draining up to 6 oz of bile day from his stomach. His latest labs showed low electrolytes because of it. I have been giving him pedialyte but I can't replace 6 oz on top of what volume he is already getting for his feeds.

Thursday is a surgery consult to discuss the bile output as well. There is a chance that some stump of gallbladder remnant or some other weird (and rare - make me laugh) post gallbladder removal thing is going on with his bile.

Friday is a sleep study. Sweet, sweet sleep. Some good data from this study would be awesome, but even more awesomer would be a way to help him sleep better!

Now, of course my life isn't all medical. Well ok it is, but it doesn't really matter because the living still happens. Sleep not so much, but living - hell yeah!

Discharge catch up

2011-03-22T21:21:00.000-05:00

Tomas was discharged on Thursday. It was a crazy scramble because I had to leave to pick up the girls from their Spring Break day camp, and the hospital staff was trying to make it easy for me so I didn't have to come back and get Tomas. It was just crazy and I still ended up being 10 minutes late for pick up. Almost enough stress to make me want to get them a cell phone. ALMOST.
He has been doing well. Not great and not just ok, somewhere inbetween. Every once in a while he acts like he is in pain, and this afternoon he ran a fever. It broke by late evening, and I hope that is that. Unfortunately it means I had to cancel our swallow study for tomorrow ( I had to call and cancel before closing and that was before the fever broke), so who knows when that will get rescheduled for.
All 3 have a pulmonary appt. on Friday and I am so anxious to go over Tomas and Olivia's plan of care. Both need adjustments, so I'll be glad for that appt.
I got THE phone call from the metabolics clinic and his appt. is on April 21st. I'm thrilled it is not 4 months away! I also heard back from the endocrine clinic on his growth hormone deficiency and they are going to do some growth vector chart plotting or something like that. Not really sure how it is different from regular growth charts, but I guess I'll find out. Turns out the growth hormone he is deficient in is not just for stature (in which he is doing great), but also for muscle development (in which he is not doing great). Very interesting...
Still waiting on the call back from the GI clinic, and Tomas still has blood in his stomach. Such a chronic issue, I'd really like to see it get fixed.
I am beginning the logistical nightmare of The Move but I will have help. The absolute best part is my husband's company pays for the movers to pack the house for us. We've had it done many times and it is awesome. They come in like a swarm of bees and in 2 days have your entire house packed. He seriously told me this time we should pack ourselves. I seriously told him I didn't think so!

Day 6

2011-03-16T11:01:00.000-05:00

Tomas is doing well. After several start-ups with feeds that increased too fast we are going the really slow approach. So far it is working, but it means an extra few days in here. The doctors (and there are lots) have all rounded. Tomas' stomach biopsy came back with chronic gastritis, and the liver biopsy came back with inflammation around the bile ducts. As usual it doesn't point them to any on diagnosis or direction, but this time around he is being followed by an incredibly caring GI doc. He said Tomas will go home with an appt. from metabolics (by-passing a possible 4 month wait), and he is going to call and/or email all his other doctors to get everyone on the same page, and that the time has come to stop the specialist approach and start managing him as a team. He will also be going home on a new medicine to try to keep his motility going and prevent any further psuedo obstructions. It has a very hit and miss reputation, so let's hope for a hit!

As you all know my husband started a new job on the 14th. It has been incredibly difficult, for him and for me. He was so torn when it was time to leave. I know he wanted to stay, and I know he needed to go. But God has covered us, and surrounded us with people who treat their neighbor as they treat themselves. In particular two people have helped a tremendous amount. Tomas' nurse came and stayed with him the first night Mike had to leave. She came off the clock and left her two small boys overnight to stay so Tomas would not be alone. It turned out to be his roughest night and she had to make a lot of decisions in caring for him, and she did wonderful. The next day my neighbor volunteered to pick the girls up from their day camp, keep them overnight, and bring them to camp this morning. This allowed me to stay all day yesterday and last night. I have friends and family who would be here in a heartbeat if they didn't live over 1000 miles away. Then I have all of you, this community of women. You beautiful, beautiful women. You who pray for my son, who send messages of compassion, hope and good cheer.
Words like thank you and grateful are so insufficient. Whether you know it or not, the glory of the Lord shines through each and every one of you and your kindnesses; and it shines unto this tiny person whose body does not work the way it is supposed to. This tiny person who does not have periods of illness, but periods of wellness, who has fought for so long, and been poked, tested, held down, and woken up more times than I care to think about. And what does he do with this light you all shine on him?
He shines it right back:

Day 4

2011-03-14T12:55:00.000-05:00

Ok- small bowel series=same torture as upper GI series. Can't anyone come up with a kinder gentler version? Sheesh. Lots of new petechiae over that one!

It showed no blockage, which is a double edged sword. A blockage meant a bowel clean out and perhaps surgery depending on what was found. So it is great that is off the table, however (HATE that word) it complicates things. Why did his GI tract shut down? It has happened in the past but because I didn't know about his ketone issue, I would just try to keep his sugars up at home. The doctor is thinking the psuedo obstruction path may be what is going on. He said the key would be to find the one "syndrome" that ties all this stuff together. Hah - just a great big "Duh!" to that one.

Anyway - we are going to try feeding him, since there is no reason he can't have food, and his bile drainage has slowed down quite a bit. He will be starting on pedialyte 10 ml/hour and then work his way up to his goal rate of 62 ml/h. If all goes well he can go home tomorrow!

That would be awesome as I have major logistic issues starting tomorrow afternoon and would have had to leave him overnight tomorrow - which would have just killed me.

So prayers he tolerates his feeds, and we get out tomorrow. Then follow up prayers for the upcoming metabolic clinic appt. for wisdom so docs can start piecing this all together!

Back in the saddle again (re-admitted)

2011-03-12T13:23:00.000-06:00

Tomas is back in the hospital again. It has only been 6 days since we were on this floor .
Yesterday he had OT at 9, and he was tired so sitting in his high chair. About halfway through the hour he looked over at me and just started crying, always an indicator that something is big time wrong with him. You've all seen that smile.
I ran and grabbed his bile drain and hooked it up to his G port. Sure enough about an ounce of bile came out. Ok - that is not a completely unheard of occurrence. But a half hour later the same thing happened, and again a bit after that. At that point I left his bile drain open and he wanted nothing more than to sit in his seat inside his crib and watch VeggieTales. I would have loved to have been able to switch his feeds over to pedialyte, but because of the hypoglycemia, I can't. It doesn't have enough sugar to sustain him. His heart rate climbed steadily and around 4 pm he began running a fever. I had called pedi and GI earlier and they both said the same thing. If I couldn't maintain him at home to bring him to Dallas. Around 4:30 I called it.
There was a pretty scary part there in traffic when his heart rate was 180 and his O2 was 93 that I thought I waited too long, but we made it. I got rushed through triage and brought right back to an exam room. Several tests, labs, cultures, and Iv meds later, he is admitted back onto the GI floor.
He is on full gut rest and still having significant bile output through his G. Docs rounded this morning and are ordering full rest for two days and then a small bowels series on Monday morning to look for obstructions.
Tomas is quite the bit perkier today. After switching from feeding him to giving him IV fluid he slowly became his happy go lucky self again. This morning he had a brief relapse after his morning meds were pushed through to his belly and intestines, but some anti-nausea IV meds and leaving him alone after that helped a lot.
So he either has a tummy bug and can go home on Tuesday if he tolerates his feeds, or he has some kind of blockage, and can go home goodness knows when.
Fun times - but at least I have my husband to keep me amused!

Ongoing glucose utilization in the absence of an ability to use ketones as an energy source

2011-03-05T18:33:00.000-06:00

I'll get to the title of this post in a bit but first:
We are home! He is doing fabulous!

GI rounded on him this morning and said he had a sever case of gastritis. He is going back on Carafate, taking Mylanta 3 times a day and his Prevacid was doubled. All of that should heal his stomach in 2-3 weeks. The cause is still under investigation, and the biopsies of several sites in the stomach should help us out there. Appt. with them on Tuesday.
Hematology ordered some more bloodwork this morning and he is neutropenic again. That was a great two days without neutropenic precautions in the hospital! Appt. with them on Monday.
Endocrinology.
This is where it gets complicated. Your amazing body has 3 separate processes for getting the energy it needs. First, sugar that comes in through the food you eat provides the primary source of energy. Any excess sugar gets stored in the liver, and when liver stores are sufficient, as fat. Second, when you have burned through all readily available sugar your body releases glycogen (the stored sugar) from your liver. In a normal person these stores can last 18-36 hours. When the stores are critically low, the brain signals the liver to save what's left and move to phase three. The third phase is using fat as fuel. Your body brakes down fat into energy, particularly a by product of fat metabolism called ketones.
When you enter this phase you are in ketosis, your body uses those ketones for energy and your blood sugars stabilize. This is the state that people on the Atkins diet are aiming for. You burn through fat stores and can remain in this state as long as you have/and or consume a lot of fat. (If you are still with me - God bless you - and we trod onward!)
Tomas has two large issues going on. He is moving into ketosis way too fast, after only 2-3 hours of the second phase. Then, he does not use what ketones his body is making (the absence of an ability to use ketones as an energy source), so he keeps burning through those glycogen stores (ongoing glucose utilization) and his blood sugar keeps dropping, within 4 hours he is in a severely hypoglycemic state. His body wants that to stop ASAP so it keeps making ketones. If left untreated, his blood sugar would hit zero, he would make way too many ketones (which are an organic acid) causing his blood Ph to change, his brain would be damaged from the lack of sugar, and eventually he would die.
It is a metabolic disorder (ps - one of the causes of gastritis is a metabolic disorder) called a Ketone Utilization Defect and the doctor told me this morning it is "really really rare". She is going to do some research and then I meet with the Endo team on Wednesday. She gave me strict orders that Tomas is not to go more than 4 hours without food, it could be a very dangerous situation for him. She also told me that she is not aware of a "cure", other than to make absolutely certain the body has readily available sugar for energy.
I am thanking God that Tomas got a feeding tube at 2 days old making it a breeze to control his feeding. I am thanking God that he has a GJ tube, so when tummy bugs hit (or gastritis for that matter) and he doesn't want to eat, I can still get food into him via his intestines. If any of that should fail he would need to get to a hospital for IV glucose.
There are a few different kinds of ketone utilization defects and they are going to try to figure out which one he has, and if any dietary changes will help alleviate his issues. None of this bothers me as much as you would think. I have known for so long that something was wrong, and to have people pay attention and want to help is a huge relief.
Thanks for tagging along on this crazy roller coaster ride!

Progress!

2011-03-04T22:52:00.000-06:00

What a long day! First Tomas went downstairs for a liver ultrasound to mark the positioning for the liver biopsy. Then we came back up to his room and waited for OR to call us down. Since it was a rather boring wait Tomas threw some fun at us by dropping his blood sugars while ON the IV fluids. Scramble, scramble, and an increased sugar solution IV was ordered and kept him stabilized. Eventually we were called down.

What can I say about that kiss goodbye? Nature may abhor a vacuum but that kiss does not. Placing your lips on your little ones forehead as they are about to be taken from you creates a nothingness, an abyss that pulsates its emptiness through to your soul. It recedes only after the massive exhale you take when you first see your child post-op.

The first doctor to come out was GI. He was able to get the liver sample with absolutely no problem, and no bleeding, praise God. HE should have the result by my appt. with him on Tues. Now onto the endoscopy. These were his exact words, "Tomas' stomach is very unhappy. It has blood oozing from everywhere." A feeling of giddiness washed over me. I wanted to do the happy dance all over the corridor. Something concrete? An answer to why he has had blood coming from his G port for 18 months? Yes!
He is treating it with some IV zantac and then doubling his prevacid for the long term. Possible causes are metabolic issues or motility issues, both which will be investigated.

Speaking of investigating metabolic disorders: While I was waiting for the oncologist to do the bone marrow biopsy two endocrine doctors came and got me out of the waiting room. We went to a conference room to discuss what has been happening with Tomas' sugars. What a relief it was to have the attention of the right people to help him. We went through everything and they assured me they would get to the bottom of what is going on. I was flying high when I left that conference and bumped into the hem/onc doctor coming to find me. The biopsy went textbook perfect and they will have the preliminary results for Monday's appt.

I went into PACU happier then I have been in a very long time. Tomas was sleeping and came out of the anesthesia perfectly, again praise God. We wheeled him up to his room where he woke up very unhappy from all the prodding in his stomach, began retching, desatting, turning blue, stomach arching, etc, etc... I ran and grabbed his stomach vent and between myself and two nurses, some zofran and loratab where able to get him settled about 45 minutes later. He was fairly touchy the rest of the evening, but has finally fallen asleep, and is on room air!
I am so exhausted, but finally, finally feel like we are making forward progress. He should get to go home tomorrow and then next week is follow up with all three clinics. Thank you all for your prayers and well wishes. If you have been through it then you know how much it means, and if you haven't, well, it just means a whole, whole lot!

Record breaker ; broken record

2011-03-04T03:30:00.000-06:00

Well he broke his old record set back in August. He made it from start time to end time on the fasting study in 5.5 hours. Last one was 6. His blood sugars hit 41, labs drawn, rescue med given, and now he sleeps. Anyone who needs a play by play can read this post from the August fasting study: Fasting Studies 101
At least this time we were able to go straight to the D10 and not try the glucagon.
I'm kind of mad sitting here tonight. In August after the first fasting study we were finally starting to get somewhere, but then another doctor stepped in. He ordered a second fasting study, during which Tomas never dropped his blood sugars. The doctor then discounted the first study saying something went wrong with it, and that the second study was the accurate one. Yet, here I am, at a different hospital, with a different doctor's group, going through the same test with the same results, feeling very much like a broken record. I'm thinking at this point the test where his sugars stayed stable was the fluke, and I am also trying to pray away some serious darkness concerning that doctor at the other hospital.
What's next? God willing, not another fasting study! Tomorrow (today actually) brings an endoscopy, bone marrow biopsy, and liver biopsy. All these tests have been waiting in the wings for so long. I am nervous. Nervous that they won't show anything, nervous that they will show something, nervous about anesthesia. Just the It's 3am and I can't sleep so I'll put my thoughts on paper nervous.
Luckily, this past Sunday's entrance hymn and Gospel were chosen specifically for me, so that 4 days after the fact I could call them up from the "Help me Lord" section of my brain. The entrance hymn was

Be Not Afraid
You shall cross the barren desert,
but you shall not die of thirst.
You shall wander far in safety,
though you do not know the way.
You shall speak your words in foreign lands,
and all will understand,
You shall see the face of God and live.

Be not afraid,
I go before you always,
Come follow Me,
and I shall give you rest.

If you pass through raging waters
in the sea, you shall not drown.
If you walk amidst the burning flames,
you shall not be harmed.
If you stand before the pow’r of hell
and death is at your side,
know that I am with you, through it all

Be not afraid,
I go before you always,
Come follow Me,
and I shall give you rest.

Blessed are your poor,
for the Kingdom shall be theirs
Blest are you that weep and mourn,
for one day you shall laugh.
And if wicked men insult and hate you, all because of Me,
blessed, blessed are you!

Be not afraid,
I go before you always,
Come follow Me,
and I shall give you rest.

The Gospel was Matthew 6:25 -

"No one can serve two masters. He will either hate one and love the other, or be devoted to one and despise the other. You cannot serve God and mammon. "Therefore I tell you, do not worry about your life, what you will eat (or drink), or about your body, what you will wear. Is not life more than food and the body more than clothing? Look at the birds in the sky; they do not sow or reap, they gather nothing into barns, yet your heavenly Father feeds them. Are not you more important than they? Can any of you by worrying add a single moment to your life-span? Why are you anxious about clothes? Learn from the way the wild flowers grow. They do not work or spin. But I tell you that not even Solomon in all his splendor was clothed like one of them. If God so clothes the grass of the field, which grows today and is thrown into the oven tomorrow, will he not much more provide for you, O you of little faith? So do not worry and say, 'What are we to eat?' or 'What are we to drink?' or 'What are we to wear?' All these things the pagans seek. Your heavenly Father knows that you need them all. But seek first the kingdom (of God) and his righteousness, and all these things will be given you besides. Do not worry about tomorrow; tomorrow will take care of itself. Sufficient for a day is its own evil.

So tonight I rest in Him, and tomorrow I kiss my baby goodbye again. For the terrible, awful, hopeful walk down the corridor to the OR. If 10,000 angels can fit on the head of a pin how many do you think can fit on a laptop's keyboard?

Admitted

2011-03-03T16:35:00.000-06:00

Yesterday afternoon, while at a playdate with my homeschool group Tomas went into respiratory distress and his nurse called EMS. He stabilizied pretty quick and we had a relatively non-urgent ambulance ride to the hospital. His J tube had clogged a few minutes before the event, but I was able to rock the syringe and get it clear. Then he began acting like he was in pain and the distress came shortly after.
We were taken down to Dallas as the EMS thought his situation was too much for the satellite campus, and were in the ER for 12 hours before being moved up to the GI floor.
Several x-rays, fluoroscopies, labs, and tests later we don't know much, except he doesn't have a UTI, his tube placement is good, and he doesn't have strep. He did get a new tube placed today because the J valve was leaky, but that is unrelated.
The plan right now is to try to get him co-ordinated for an endoscopy, bone marrow biopsy, fasting study, and metabolic testing all before the weekend. It would really stink to have to come home just to go back and do all that testing!
He is on full gut rest right now and eventually we will run pedilayte and then formula through. He was incredibly distended and had lots of bile leaking out of his J port yesterday. Today, after a day of no feeds, he is back to normal.
As always, I am praying that this is the time something shows up on their radar screen.

GI issues :(

2011-02-25T11:05:00.000-06:00

First - I love having a nurse for Tomas. It is so reassuring to have another pair of eyes on him. She has worked with him for 7 days now and only had one uneventful write-up. She is definitely getting lots of multi-system experience. I even left her with Tomas and ran the girls over to the library the other day. It was a quick trip, only about 40 minutes, but it was just so nice to be able to focus my attention on them. Bonus, we started school back up this week and managed to finish everything on their lesson plan, and went to go see a children's concert at the Dallas Symphony Center yesterday (with nurse and Tomas in tow).

So Tomas: Tomas, Tomas, Tomas...
He is having GI issues. This past weekend he started retching again. A few minor episodes, and then on Monday a fairly large one. He had an appt. with his surgeon anyway to look at a mass by one of his scars, so it worked out well because I am concerned that the hiatal hernia repair may be giving way. The surgeon looked at the mass and said it could be scar tissue or could be the abdominal hernia opening up again. He would put orders in the computer for the GI to check it out when Tomas has the endoscopy. As far as the retching, the surgeon checked an x-ray from January that showed the repair in place. That's all great - but he wasn't retching in January. For now he thinks it could be a stomach virus.

As the week progressed, the GI issues worsened. By Wednesday he cried after being on the J feeds for only half and hour. I can't switch to pedialyte or take him off feeds because of the hypoglycemia. It is J feeds with formula or ER for IV fluids. With the nurses help we were able to reduce the rate and figure out how much sugar to run through to keep his glucose levels stable. Slowly increasing I was able to get him back to normal by yesterday afternoon. His nutritionists were out this morning and he has lost 7 ounces in the last 2 weeks. He has not slept in 3 days, and not slept well in about 2 weeks. He is actually napping right now, and I pray he sleeps for several hours, but it hasn't happened in a few days. The longest time he's slept for since Friday is 1 hour and 40 minutes. He moans in his sleep and is clearly uncomfortable. Poor baby, if this is just a virus it is taking its toll.

My husband has started hi job in NJ, and will be travelling back and forth, which makes me all the more grateful for the nurse. I tried calling the new hospital in NY to get the ball rolling with transfer of care. I was transferred 4 times and then disconnected. This is going to be a long road. And if somebody doesn't start sleeping soon it is also going to be uphill!

Faith, Hope, and Pixie Dust

2011-02-16T23:37:00.000-06:00

Faith
Olivia continues to do amazingly well. Just a palm sized bruise that only bothers her during sharp movements, but other than that she is fine. I can not express how wonderful that feels, for her as well I'm sure!
Tomas saw the urologist today. His renal scan was clean but there was some bladder wall thickening that needs to be watched. The urologist felt that since the bacteria Tomas grew was so rare that is just couldn't be true. He wants to catch it again but with a cath. This means having him cathed every time he has a fever, or if we have any suspicious urine output here at home. This makes having a home health nurse such a blessing. That is the silver lining in a rather disappointing morning! Some days the whole "tiny pieces of the puzzle" thing just really grates on me and it takes a whole lot of prayer to just get out of my cozy chair. Just once I'd like to walk into a doctor's office and have the doctor know what is wrong and how to fix it. It often happens that investigating one thing causes us to to trip over another. The bacteria was found while checking for a urine metabolic disorder, and the bladder wall issue was found while checking on the bacteria. Plus, I feel like every time a test result comes back normal we get further and further away from a common diagnosis, or maybe further and further away from a diagnosis at all. But somehow God moves me forward, and as every mother of every SN child out there knows, somehow we rally and rise again.

Hope
The nurse is working out very well. She is young and new to nursing, having only worked in a hospital for a few months. Tomas is her first home health patient. At first this sounds rather scary, but I like that she is not coming in filled with a preconcieved notion of what kids are/aren't supposed to do. She is, of course, quite competent in the basic nursing stuff - BP, HR, O2 - all that, but otherwise rather the blank page. That is ok though, because she watches, listens, has a quick learning curve, and I get it all done my way because she has no other experience to draw on. She works 3 days a week with Tomas and I am very much looking forward to the options this will open up for me and the girls once we are all comfortable.

Pixie Dust
As some of you already know, my family is moving (again - it's what we do, lol). Mike accepted a promotion and will be working in NJ. He worked there for a while before (it is his company's headquarters) and we lived just accross the state line in NY. That is the same area we will be looking at this time. The best part of this whole deal is no travel. He will have a regular office job and with the excepetion of a few meetings a year, be home every night. That is such a burden off my mind I almost had to put this in the faith section. Some nights I have a hard time falling asleep just wondering how I will manage if Tomas needs to go to the hospital while he is away. We have no family close by, and really - who else do you call at 3am to come and watch your kids? But it goes in the Pixie Dust section because that is what it will take to make this happen. The thought of buying/selling a home and transferring medical care just about paralyzes me! Not to mention a very difficult transition period where Mike will already be working from NJ before we are all moved up there. He will be gone for 2 weeks at a time. Again, the nursing was truely a blessing. I have meetings with the admit team the week of march 7th, and Mike starts the new postition on March 14th. Like I said - lots and lots of Pixie Dust!!!

Sunshine and Lollipops

2011-02-13T17:11:00.002-06:00

We had a fantastic week with my mom. The kids all had a blast with her. They made a snowbaby together, did Valentine's crafts, made fudge (my favorite part!) and stayed up late watching movies. The week went by too fast!

It was not all sunshine and lollipops though, on second thought it was. Olivia had her cardiac ablation on Wednesday, and because the weather was supposed to be terrible early Wed. morning and she needed to be there at 6:15, she and I drove down to Dallas the night before to stay at a hotel. This is the first time since she had any sibling that she and I have been alone at night together. We had a blast. My husband is a frequent traveler so the hotel chain sent up some free ice cream and sodas, and we had access to the concierge lounge with even more goodies. We stayed up playing cards, eating ice cream (until she was NPO), and just having some wonderful time together. The next morning we made it to the hospital just before the weather turned really bad. She took her goofy juice and was just hysterical to be around. My sweet, sweet angel. What a soft spot is in your heart for your firstborn! They took her back around 9 and were done by 12:30. That was pretty good considering they had warned me it could take around 5 hours. The doctor was able to freeze the bad spot, and told me it was for sure an AV Nodal Re-entrant Tachycardia. If you are going to have heart palpitations those are the ones to have! So all good news. She recovered just fine, with a small scare to a resident overnight with some funky heart rhythms, but the cardiologist put us all at ease in the morning. All in all quite a successful and uneventful hospital stay. I must say I spent a large part of the time waiting for the other shoe to drop. It was just so surreal to have everything happen the way it is supposed to. She is recovering perfectly with just some leftover soreness. I couldn't be happier!

Tomas is as Tomas does. I think that will be my new catch phrase for him. My mom was here for 8 days and we had three doctor visits, two Rocephin injections, one lab draw, one new issue pop up requiring another -ologist, and one ECI evaluation with 7 people at my kitchen table. He is stable, and got an all clear for the UTI from a few weeks ago, but with the last urinalysis some ketones were in his urine. I'm grateful for this, I have been testing him at home and have been telling the doctors he's ketotic, but now I have clinical evidence. The pedi is trying to get the endo consult moved up. In the meantime Tomas has a kidney ultrasound on Wednesday followed by a meeting with his new ologist - the urologist. He actually had one until he was 5 months old, but then was discharged. So not sure if it counts as new or not.

Yesterday the weather finally warmed enough to take him outside. See if you think he enjoyed it:

Forgot to add that the nurse couldn't make it on Wed or Thurs because of the weather, but everyone muddled through just fine. On my way out the door I asked my husband if he knew what to do if the button should come out. He said just one word.

Panic.

My dear heart

2011-02-07T15:25:00.000-06:00

Olivia is having her cardiac ablation on Wednesday. Up until now I have been pretty nonchalant about it, but as the hours creep closer, the panic grows larger. Did I make the right choice for her? Ugh.. that is the curse of parenting, did we do it right? She can't take any cardiac meds because of her asthma, and she hates the SVT episodes and voted for the procedure when I asked how she felt about all this. I hate doubt!
She will be under for about 5 hours, the doctor maps the heart and burns any bad areas. A cardiac surgeon is on standby - just in case, blech. I am also worried about her asthma doing things to her breathing during and after the sedation. She and I are driving down to Dallas on Tuesday night, as a large snowstorm is supposed to head our way on Wed. morning. I'm glad we will have some special time at a hotel on Tue. night before she goes in. She has to stay the night, but if all goes well we will be home on Thursday.

Tomas had to go back to the pedi this morning for a re-draw of that pesky urine infection, and still needs follow up with the urologist. We are waiting on scheduling for the kidney ultrasound and VCUG. He also needed a shot of Rocephin today because of a pesky sinus infection that wont go away even after two different antibiotics. So he got an injection and a cath today, not a happy camper. Well, ok now he is, but at the time he was pretty ticked off!

In other news, his nurse comes out tomorrow for training. She will be here T,W,R - the days my husband usually travels, from 9:30-5. To say I am excited will be an understatement for sure. My girls aren't going to be to happy because I have now decided to take full advantage and go to a 3 day school week, pretty much matching the nursing hours. That means longer hours those 3 days, but off on Mon and Fri. It all worked out so well though, because now a nurse will be here with my husband and Tomas for the days that I am at the hospital with Olivia. Thank you, God for your perfect timing!

8 years ago

2011-02-04T00:01:00.001-06:00

The world became more intense. Most of the world doesn't know this yet, because most of the world doesn't know Victoria Maria. But you will, she is not the type to go unnoticed. Beware, because she has exacting standards of justice and fairness; but do not fear for she is also filled with mercy and compassion to nearly overflowing. Lucky for you world she is not ready yet. Much needs to be honed and shaped still, but this I know - she will meet you head on and she will live in you with an energy you rarely see. You will be better for it.

So glad this week is over!

2011-01-30T10:09:00.001-06:00

It was a long one! The two ER visits last weekend, GI on Monday where he told me he wasn't the right doctor to help Tomas, Tuesday brought a pedi visit for the girls who have been battling this virus for two weeks, and then Thursday.
I applied for a medicaid waiver for Tomas, he was approved, and in order to start nursing services I had to bring him to a nursing home overnight. I went to the center on Thursday morning and filled out all the paperwork. Then we went to our two big appts., then at 11:45pm I had to bring Tomas back to the home for his "stay". It was very easy, but such a long day. My husband was out of town so I had to bring the girls with me. We got home around 1am. Thank goodness for homeschool and not having to wake up early the next morning!
But it is done. He has medicaid!! The nursing agency is sending someone out on Monday and we will get a schedule set up. Also, my husband's company switched to co-insurance this year so having the secondary insurance will be such a blessing.
Now for the appointments. We met first with the hem/onc and she wants to go ahead and repeat the bone marrow biopsy. Then on to the GI across the hall. He spent a ton of time with us and went over everything. I had typed up a GI history for the visit and we went over the whole thing. We then went back across the hall to hem/onc to finish up with her. All total we were there 4 hours! My girls were so good, and we still had the nursing home to do that night!
So what's the plan? Well, the GI wants to proceed with the endoscopy, and he wants a full metabolic workup done in the hospital, and wants to get the endocrinologist to do another fasting study. He thinks the elevated liver enzymes are not related to the liver. They are referred to as liver enzymes but they are also present in skeletal and cardiac muscle. Basically, an elevation in the enzymes only occurs when either the liver or muscles are damaged and the enzymes "leak" out into the blood stream. The doctor thinks a type of muscle breakdown disease may be the culprit. That makes my choices so far some kind of liver disease or some kind of muscular dystrophy. As I told a friend the other night - I'll take door #3 please!
I am not ready to throw the liver disorder out the window yet though. It explains so many of his symptoms that a muscular myopathy wouldn't; I can't dismiss it yet. Unfortunately, the only definitive way to check for it is the biopsy. So for now it gets pushed aside. First comes the admit.
The only catch to all this is that Tomas tested positive for parainfluenza at the ER last weekend. He now has an upper respiratory infection and the croup. So no sedation for six weeks.
At this point my week really should have been over but it was not to be. Friday came with a late morning for the girls, followed by a pedi visit for Olivia and Tomas. Olivia has severe asthma and had been blowing in her yellow zone for 4 days no matter what treatments we tried, and Tomas is, well, Tomas. So prednisone for both to get those lungs back to normal!
Ok, Friday evening, everything should be settled down by now right? Wrong!
I was cleaning up a bit in my bedroom and the kids were all in the living room watching TV when I hear a panicked "Mom!" coming form Olivia. Tomas' GJ tube came out. The balloon ruptured and the whole darn thing just slipped right out. So I grabbed him and put an old G button in to keep the stoma open. Great, that's the emergency part, keeping the stoma viable so no repeat surgery will be necessary. Now what? Can I feed him into his stomach? Give him pedialyte? What about his hypoglycemia, and dumping? It's a Friday night, no IR doctor is going to be at the hospital, if I take him they are just going to start and IV and make me wait until morning. And my husband was still gone! A few phone calls back and forth between Tomas' pediatrician and the GI doctor on call at the hospital and we came up with a plan to keep him home and keep him safe. It involved lots of blood sugar checks on my part, but he made it through perfectly. Saturday, we drove down to Dallas to get the tube replaced while a friend watched the girls. The GI on call doctor never put the orders in so it did take a really long time, but other than that all was well.
I am so ready to start a new week, and shove this one to the deep recesses of my mind, preferably to a black it out area! Tomas is still not feeling great and very week. He played a bit on the floor this morning, but really has just wanted to sit in his little recliner chair that PT brought out for us. I hope to see him gradually improve over the next few days. It has been a rough go for him lately!

This Wednesday I meet with the endocrinologist. The GI would really like to bring him on board. Up until now, it has been a challenge to get any endo group to pay attention. In the words of our old GI, "If your kid doesn't have diabetes, you're not going to get anywhere with endocrinology." Hopefully, the notes from the GI clinic will help to propel things forward, although the GI did say he would pick up any slack left behind by endo. He must be used to them.

I am just grateful that we are moving forward. I've felt stuck since summer and would really like to make some headway in the diagnosis game!

Big Neon Signs

2011-01-25T14:59:00.000-06:00

Friday morning Tomas had another suspected hypoglycemic seizure. I actually forgot to check his sugar because I was so in the middle of fixing him and getting sugar into his body. Again, this is the mystery metabolic disorder we are still hunting for. Friday night he spiked a fever and Saturday morning I had to take him to ER to get his ANC checked. That is his infection fighting blood cells, and because he runs chronically low any time he has a fever her needs to get checked. Since the only place to do that on a Sat. morning is ER - off we went.
His ANC was only midly low so he was able to just get IV antibiotics; however (damn that word) his overall WBC was very low, and his platelets were low also. This bought a call to the hematologist on for the weekend. Any guesses on who it was? The doctor whom I dismissed last week. Sigh. He sent us home, following ANC protocol. I think that is my biggest issue with him, he is a competent doctor, but I have never, not once, seen him step outside the box. Anyway, home we went.
Sunday Tomas still had a fever of 102, then in the early evening when I vented his stomach it had so much more blood in it then ever before. He wasn't gushing or anything - just so much more than usual. I called my husband in and even he thought it was a lot of blood. I debated about taking him in again, but then remembered the low platelets, so off we went again. The ER was packed that evening and it took almost an hour to get triaged. Once that happened though we got right in. The nurse said we trumped everybody out there so we went to the front of the line - kind of a strange perk but a most welcome one at the time.
The ER doctor said he would most likely be admitted, they ran in some IV Zantac to stop the bleeding, and drew labs. His platelets were up and his WBC was slightly up, but his ANC was slightly down; so another call to the hematologist on duty (yes, still the same doc) and he said it was ok to discharge him. I told the ER doc I was not comfortable taking him home with the GI bleed, fever, and funky blood numbers. She called the GI on duty and ran through everything, and he also discharged Tomas, with orders to see GI the next day because as it turns out his liver enzymes were very elevated and his liver was enlarged. He also doubled Tomas' dose of prevacid, which the nurse tried to give him by mouth (that is why I can NEVER leave Tomas' bed - just too many things can go wrong). I told the ER doc I didn't want to give him the med because he already had hardly any stomach fluid and I didn't want to make it worse. So I had to refuse it, and we went home, at 3am!!! Crazy.
Now I was supposed to follow up with GI for the elevated liver enzymes on Monday. I knew it would be a battle because of the difficulty I had getting Tomas switched over to the hospital clinic in the first place. First thing Monday morning Tomas' pedi called to find out what had happened over the weekend and he was just shocked that Tomas wasn't admitted. Me too. Anyway, he said to try the clinic and if I had difficulty to call him and he would run interference for me. I called the clinic and told them what was going on, she said she would call me back in a few minutes with an appt. 2 hours go by and the pedi calls to find out how things are going. I had to hang up with him though because the GI clinic was calling in. The woman on the phone said that the doctor said until Tomas is an established patient that I needed to follow up with the current GI. His new patient appt. was on Thursday, and I had been seen at his hospital. I called the pedi back and he called out to the old GI and got me an appt. that afternoon. In the meanwhile I called the hem/onc clinic and got an appt. for Tuesday morning with his regular doctor to follow up on the cytopenia issues.
Tomas' bleed was still under control and I went to the GI appt. and met with the doctor, whom I like very much. We were leaving because the oncologist wanted to do the whole "team admit" thing and work closely with the GI at the children's hospital. Anyway, the current GI walked in and spent an hour firing me. He was so nice and compassionate and just fully admitted that Tomas' care was beyond the scope of what his practice could offer. He though it was a great idea to team up out at children's. He said the best thing for Tomas would be to have a medical student assigned to him who could spend the hours of research necessary. He also admitted that he ordered the wrong test when he ordered the metabolic study for the glycogen storage disease. Turns out we waited 6 weeks to find out Tomas does not have a chronic inflammitory disorder.
As I was leaving the office, already feeling quite dejected, a voice mail came in from the hem/onc clinic saying that the appt. for Tues. morning had been cancelled and that Tomas did not need to be seen. To say I was at a low point was an understatement. What is it going to take to get someone to pay attention to this baby? Here he is with a GI bleed that has been going on so long it has depleted almost all the iron stores in his body, he is hypoglycemic like clockwork about 4 hours into a fast, he has chronic neutropenia which no one can explain, and an immune system that is so suppressed he is growing a bacteria in his urine that the pedi had to go look up because he had never heard of it.
So I got in the car and started talking to God. Clearly, this was not the path I was supposed to have Tomas on, but if He could please show me the right path in the next, oh let's say, 12.5 seconds I would greatly appreciate it. Do I let Children's try this team admit? Do I pack him and the girls up and head to Houston, do I wait it out until the summer when I can take him to NYC? I called a friend and she commiserated with me (thank you friend), and said she would pray that God send me a sign.
I hung up with her and not 10 minutes later Tomas' oncologist called. This is the doctor who was determined to help Tomas at our last appt. and wanted to get the team together to do the admit and testing. She talked with me for almost an hour, and we went over everything. She had heard through the pedi that I wasn't particularly comfortable with the GI switch over. I told her I wasn't because that doctor wanted to give me an appointment for March 21st, even after I told them that they were not seeing Tomas for feeding issues, but the GI bleed and elevated liver enzymes. It took the pedi calling for me to get the appt. on the 27th. She said that didn't really make any sense because she had met with him for an hour about Tomas and he was very intrigued. She said it sounded like a front office issue and that she bet me if she spoke with the doctor he would not know any of this had gone on. It turns out I misunderstood the pedi, he didn't call the GI to get the appt. moved up, he called her, and SHE called the clinic and told them to get Tomas in asap. She also told me that one of the swabs from Sunday' Er trip came back positive for parainfluenza, which could explain the WBC suppression and platelets, but is not a virus associated with elevated liver enzymes., that is all Tomas. She asked me to please give this a try. She cancelled the appt. for Tuesday because she wanted to see me the same day as the GI doc at the same location and save me the drive to Dallas. So come Thursday I meet with them both.
That evening the pedi called again to check on how things went at the GI. I told him everything that had happened and he was almost as relieved as I was. He was shocked that the GI had dismissed us, but agreed that the doctor was limited in what he could help us with. He also told me that any future ER visits should be down in Dallas. I like to use the satellite campus because it is so much closer. But he told me that he had never heard of giving someone IV Zantac to stop a GI bleed and then sending them home. He was mad that Tomas wasn't admitted (he doesn't have rights out there) and said that if he were in Dallas at the teaching hospital it would never have happened. He has been Tomas' strongest advocate and I am so appreciative of his efforts.
Sometimes God sends me signs so unobtrusive I don't recognize them until well after the fact, other times things happen that just nudge you along, and then there are days like these, when big neon signs hit you square on the head. And although it wasn't EXACTLY 12.5 seconds I am grateful that I was not left at that low place for long. I couldn't have stayed there anyway - Tomas is still sick, and so are both girls!

Where's his birthday post??????

2011-01-20T13:31:00.000-06:00

His birthday was on the 16th, today is the 20th - what am I waiting for?
Just for putting my mind together.
Of course there is more medical stuff going on but I wanted to get the birthday post in before I relay any of that, and really it is just more questions and no more answers; too annoying to write about. I can't really find a word for how I am feeling these days. I just know one thing; I do not want a do-over.

We had a quiet day, it was too cold to go outside, and he is too immune compromised to go anywhere inside, but we had a special day anyway. Lots of love, lots of attention, lots of singing, playing, reading favorite books, and watching favorite shows. The girls and I made him a special cake.

I think he liked it (could only taste the frosting):

Wrapping paper is the bestest ever!

Just love that cute little face.

Right now we are waiting on a bunch of doctors to come together and get some testing done. Waiting is hard, and fatiguing, and frustrating; but giving up would be harder, more fatiguing, and more frustrating. Instead we wait - in joyful hope, because as for me and my house we will serve the Lord. and who wouldn't hold out joyful hope for this:

Tiny whispers

2011-01-13T20:29:00.000-06:00

I had a first today for me - I had to fire a doctor. It felt horrible, but it needed to be done. I love Tomas' hematologist, but not one of the other doctors in the clinic. We have seen this other doctor several times, and although he is kind he has a very laissez faire approach to patient care.
I called Tomas' CCBD clinic two weeks ago and asked for an appointment because I was concerened about his labwork trend. This doctor saw us (our regular was not in clinic that week), and he dismissed it. For today's appt. I really needed someone to listen to my concerns, and it was supposed to be with his regular doctor.
However, Dr. X walked in the room. My heart sank, I asked if we weren't supposed to see Dr. Y. He said she was around, and asked what was going on with Tomas. I told him everything and that I was worried. He said it sounded like it was a follow up for GI. I said I was having trouble getting a timely response from GI and getting Tomas' care moved over to the GI clinic at the hospital also would take a while. He said that would be ok.
I took a deep breath and said, "I'm sorry, but does this mean we are not seeing Dr. Y?"
He asked if I wanted to see her, I told him I did and that for continuity of care for Tomas I thought it would be better if I stuck with her.
He told me he had seen Tomas a few times already. I told him I'd really like to stick with one doctor throughout this diagnosis. A few more words (none unkind) and he was gone. That was so hard!!! At that point we were called back to lab.
Later, Dr. Y walked in and I don't think she even knew Dr. X was in because the first things out of her mouth were, what is going on with your baby, we need to check this, and this, and that.
She looked over the spreadsheet I put together and was very concerned about the low calcium and low protein. She said his body has very little muscle mass and is using his nutrition to rebuild lost tissue it is burning for energy. He is unable to build any significant new tissue and his nails are showing signs of chronic calcium loss. The she said very firmly, "This is not diet related!"
She also said that as this point she thinks he has two separate syndromes going on (not including Down syndrome - we are so far from that now it is not even funny). One syndrome to explain the neutropenia, liver and hypoglycemia; and another for the inability of his body to metabolize food properly. His labs showed a huge increase in iron, which she said was because I had just given him a dose a few hours earlier. However, the iron binding proteins were the highest she's seen in anyone in a while, which tells her his body is absorbing the iron but unable to use it properly.
She asked if I had though about moving GI care back to the hospital clinic, and I told her that the scheduler said I needed to have records sent over, the doctor would need to review, and then Tomas would need to get a new patient appt. She told me to wait a minute, left the office, came back a few minutes later and told me she and the GI were going to meet this evening about Tomas!
There was so much more but honestly my head is swimming. What it boiled down to was she thought it was time to be very aggressive in getting some metabolic testing done.
She already knows GI wanted to do the scope and liver biopsy, and she wants a repeat bone marrow biopsy. So, the plan right now is after tonight's meeting, and hammering out of details, and possible bringing in of endocrinolgy, Tomas will get admitted. I don't know when, but am assuming sooner rather than later since the GI bleed still needs to be addressed.
I am on pins and needles. My biggest fear right now is that something will fall apart and the admit won't happen, or that someone will tell me that there is nothing wrong with Tomas, and to stop worrying.
I hope that I finally have their attention and can keep it this time long enough to get a diagnosis, and a treatment plan. His PT was out this afternoon, and since Tomas had not had any floor time this morning, and had taken a nice afternoon nap I was hopeful for a good session. He played a bit on the floor, and then tried to pull up to stand (to get my computer - turkey!) and then about 25 minutes into the session he scooted over to me and grabbed at me until I picked him up. Then he laid his head on my shoulder, panting from the hard work, and rested.
She wrote in her note that he was having difficulty acheiving tasks he was performing well just a few weeks ago, and that she was bringing a feeder chair next visit for supportive sitting when he is worn out. Watching the progressive weakening has been the hardest part. It is by no means severe, but I have noticed it for a while, and now the therpists are starting to see it. I pray once we get the iron under control that will resolve most of the stamina issues.
Thank you to all who keep him in your prayers. They are powerful indeed. They came in like a thousand tiny whispers and pushed me forward this morning to advocate for my son.

Could be this or this or this or that

2011-01-12T07:03:00.000-06:00

Pretty much sums up my phone conversations with the pedi. He called me, we talked about 1/2 hour, he called me back about 10 mins later and we talked for another 20 mins. It was all conjecture and enough to make me insane! He wants an arterial blood gas sample because of some of Tomas' labs, and thinks it is a good idea to repeat the fasting study. Since those need to be done at the hospital he is laying it all at the feet of the hem/onc doctor whom we see tomorrow.
Clearly, nothing that is going on is enough to bring him to ER but this chronic drain on him is taking its toll. His SLT was out yesterday and before I gave her any updates she said he looked lethargic and not himself at all.
There is so much swimming in my head right now:

the iron - why such a severe deficiency? And if it is as severe as the docs are telling me then why just an iron supplement to bring it back up? It takes forever for those drops to work. His iron was 16 last week, maybe it will be 17 or 18 this week, but 50 is where they would like him. Long road there. Also, we need to find the cause of the GI bleed. Because I am a woman on the edge, I tested his gastric acid on a urinalysis strip and it came out (very) positive for blood, even though there were no specks in it this time. That means (unless you are supposed to have blood in your stomach - which I don't know) he is bleeding all the time, not just when I can see it. His iron stores aren't really going to get better until we address that.

the hypoglycemia - He can only go about 4 hours without food before his sugars start to drop below 60. I have checked his urine during the fast for the last 3 days and it always has keytones in it. If you are familiar with Atkins you know that means your body is burning fat as fuel instead of sugar. Most people can go 18 hours or more before they have burned off all their sugar stores (from the liver) and their body moves into fat metabolism. It is the whole theory behind the induction phase of Atkins. But in Tomas' case he doesn't have enough sugar stored or is unable to access it. What gives? This was what that fasting study back in August was supposed to answer. The first one was the same as now - 6 hours into the study and his blood sugar was in the 30s and keytones in his urine. Just not supposed to happen - but two days later he went 18 hours during a fast, so he was went home with no further investigation. Here we are months later back at the beginning. This state of acidosis could also be the reason for his different breathing. Apparently the lungs have to go alkaline in order to compensate, which would explain Tomas' low Co2 levels and elevated anion gap. (this was what much of the phone call was about - the anion gap - sent me to the computer big time!)

the neutropenia and petechiae - I have researched and researched to try to find links between anything that is going on. Turns out that iron deficiency anemia, neutropenia, and petechiae can all be caused by a copper deficiency. How come no one checked this yet? Should he have a copper deficiency - no, but he shouldn't have an iron deficiency either. I'm going to ask on Thursday.

the IgM defciency - Total protein measured in the blood is made up of albumin and globulins. Tomas' albumin is normal, but his globulins are low. Also Tomas' Immunoglobulin M (IgM) is low. There is also a complicated link between iron deficiency and immunoglobulins that I am still trying to wrap my head around, but again I will ask on Thursday.

Those are the 4 big ones; anemia, neutropenia, hypoglycemia, and IgM deficiency.
Add in elevated liver enzymes, low serum globulin, low serum calcium, and an elevated anion gap and you have a giant mess. Once again, this blog is my mental unload, and orders the data swimming in my head. I have read more scholarly articles recently than I did while I was in college. In fact if YOU have read this far, God bless you and go take an aspirin.

Tired and worried

2011-01-09T21:06:00.000-06:00

Tomas has taken poor sleeping to a whole new level - no a whole new planet. I'm sure it is the iron bothering him, even though it is going into the J. He is grouchy and tosses and turns and flips and flops and whines and cries all night long. Add to that an extension set that popped off his feeding button because he was flipping around so much causing a huge mess at 3 am and you have two very tired parents and one very exhausted baby.
I'm worried too. His breathing is different, deeper and coarser, but his O2 has been good since that first night. His heartrate is up even while he is sitting in his crib watching VeggieTales (his current fave, and the only thing that consoles him right now). I put him on oxygen today to see if it would help his heartrate; it did - it came down a bit, but not much. His sugar was low this morning, and I checked a urine sample and he had keytones in it. That is not supposed to happen, but I don't understand why no one can put all the pieces together.
We had a snow day today or I probably would have brought him to ER. Not a true emergency, but worried enough that if the weather was good I would have went. Instead I kept the O2 on to buy us until tomorrow when I can call the pedi. Tomas is supposed to see oncology on Thursday, but I don't know if this can wait.
I am so tired of putting bandaids on symptoms without being able to get to the bottom of what is happening. I really hope this week brings some footwork on the part of his doctors. We need some relief!

Update #2

2011-01-06T18:59:00.000-06:00

I remembered what the hematologist brought up to change the pedi's mind. It was because Tomas' reticulocyte count was low.
That measures how many new red blood cells your bone marrow is making. If it was dietary insuficieny then the retic should have been high to replenish the low hemaglobin count. But since it was low that meant there is hardly any iron left even in his bone marrow - which points to a chronic, slow GI bleed. The pedi said it would have had to have been going on for about a year. I told him that I first mentioned blood in his belly in July '09. His GI put him on carafate for it. So on and off he has been bleeding for about 18 months. Eventually he depleted all his iron stores, and we are at the point now where his body is robbing Peter to pay Paul. His blood will stay oxyginated at all costs so it robs iron from his organs to keep the O2 up. They even said it might explain what is going on with his liver.

UPDATE

2011-01-05T17:54:00.002-06:00

- Pedi just called after having talked to hem/onc. Everything is turned around again. They now think it is most likely a GI bleed, can't remember what hem/onc said that made pedi change his mind, was one of his other levels. Don't put the iron in the G, put it in J and get him scoped. GI didn't seem interested in scoping so time to get a new GI. Tomas' llast endoscopy was July '09 and he had duodenal uclers. Pedi said didn't GI follow up, nope, didn't think it was necessary. Pedi and hem/onc want me to go back to the GI we had before an insurance fiasco in Sept. '09. Call tomorrow for appt, and if I can't get one soon then have pedi call him personally. At least this makes more sense than trying to say the J was preventing absorbtion

Fe, TIBC, GI, G, J (this is not an eye exam)!

2011-01-05T15:32:00.000-06:00

For about 8 weeks now Tomas has shown a steady decline in energy and stamina and has been sleeping even more miserable than before. I have brought it up here and there to doctors who take one look at his smiling face and say everything is fine. That smile is the reason no one in the medical community takes me seriously! He can't possible be sick - look at that smile! (I love that smile!) I just want it to be as frequent as it used to be. It is hard to confince a doctor that he used to smile ALL the time, and now he only smiles HALF the time.
Anyway...
Turns out he has SEVERE iron deficiency anemia, he has depleted almost all the iron stores in his body. His iron levels are less than half what they are supposed to be and his ferritin (iron stores) is neglible. His TIBC (total iron binding capacity - a protein the body makes to bind iron) is really high; meaning his body is making all these extra proteins to try and find some iron, any iron. How sad is that?
We found this only after I sent a spreadsheet to the pedi last week showing him the steady decline in Tomas' Hgb. He agreed to check his iron and iron stores since we were going to check his neutrophil count again anyway. Low and behold, we now know why he is so miserable and his breathing is more labored than normal - no iron. Ya think?
The pedi thinks it is because Tomas is J fed and he is not absorbing the iron in his diet since iron is best absorbed in the duodenum (right as the stomach empties). Fine, I'll give him that. However, Tomas has been on J feeds for 19 out of his 24 months and not had any iron issues or Hgb issues either. Why show up now? Nothing in his diet is different, and he gets 130% of the RDA for iron. So why now is he having trouble absorbing it? I don't buy it.
Pedi called GI and he wants to start on iron supplements (fine) 3 times a day into his G (not fine). First I don't think adding more iron is going to help since he already has enough in his diet - but ok - we'll give it a shot. Second, we all know Tomas has a GI bleed, not major, a little blood here and there in his g tube when I vent and a small amount of bloody discharge around the stoma. But I am very hesitant to put IRON into his G and send his stomach realing. Pedi wants me to mix it with vitamin c and some pedialyte (low sugar - Tomas has hyperinsulin dumping when we feed into the G - so I can't put any significant amount of sugar into his G) and if he is having difficulty with it then to just run it through the J. Ok wait, the J? The J that you say is causing the non-absorbtion of the iron in his diet in the first place - how does that even make sense?

Ugh and double ugh - can anything ever just be straightforward? I am really hesitant to put absorbic acid and iron into an empty belly that we know has an open wound, call me crazy, but the pedi wants to give it a day (3 doses) and see what happens. I am going in an hour to pick it up from the pharmacy. A very large part of me wants to wait until we see hem/onc on the 13th, but if the problem is as significant as pedi made it out to be then I know I shouldn't wait that long. Wish me (and him) luck!

Some kind of syndrome

2011-01-05T08:00:00.000-06:00

Yesterday's labs came back with Tomas having iron deficiency anemia. We knew he was anemic just waiting on the type. Now it should be easy enough to fix - just an iron supplement right? You all should know Tomas better than that. He gets plenty of iron in his diet and since he is tube fed, he gets iron all the time. Not like an oral feeding toddler who suddenly goes all picky.
So the next question is why isn't his body using the iron that's available? Two theories - malabsorbtion or a GI bleed. I know he is bleeding in his GI tract somewhere as I vent out coffee ground blood from his G nearly every day, but is it enough to cause the anemia? Don't know - I'm guessing he has a scope in his future. The malabsorbtion isn't out of the question either since his calcium and protein are running on the low side, and again his diet is strictly controlled. All in all it means a rather thorough GI check up. Also, his WBC continues its decline but his ANC is steady at 500.
I had the girls in for the pulmonary follow up yesterday afternoon and the doctor was asking me for an update on Tomas. I went through the biggies that we are dealing with right now - hypoglycemia, anemia, low IgM, and neutropenia. He actually stopped reading his charts, looked up and said, "Well, it MUST be some kind of syndrome." Yes, thank you for that very helpful piece of medical information. The part that drives me crazy is all the doctors agree that since there are multiple body systems involved there MUST be a syndrome to explain it all, but we are no closer to a diagnosis then we were 9 months ago. The pulm then went on to say that even if we get a diagnosis it may not help much as far as treatment. I know. I do, I really get that part of it, but can you imagine what a difference it would make for me?
When he cries because he has been scooting around on the floor and can no longer do it and needs to be picked up, when his mystery rash breaks out, when the cold sore pops up on his lip, when I have to start his feed early because his blood sugar is dropping after a 3 hour break instead of the 4 hour scheduled one; finally, I will be able to say, "It is because of syndrome B." No more, "What is wrong with my baby?" That makes all the difference in the world.

Harumph and a foot stomp.

2011-01-04T07:16:00.000-06:00

I haven't posted because all I could think to say was one big BLECH! First let me say Tomas does not have a cold or the croup or an upper respiratory infection. Which is fantastic becuase any one of those could do some serious damage right now.
His latest immune panel came back unchanged, which means his immune system is still about half what it should be. His ANC has been steadily dropping, down to 473 on Thursday, with labs again today. He is anemic and his labs are starting to show that he is depleting the iron stores in his bone marrow. He is fatigued, pale, and mostly just wants to be held. But does anyone know why? Of course not. He gets almost double the RDA of iron in his diet so he should be able to pull it, but can't. The same thing has been going on with his calcium and protein, his diet is rich in these but he is borderline low there as well. Ugh.
I also finally got a hold of his GI nurse, but the metabolic labs are lost. They were drawn on 12/7 and were sent to another lab for the test. They are supposed to be sent back to the original lab who then forwards on to the doctor, but the doctor doesn't have them. The nurse is going to call tomorrow to find out what happened. Hopefully, the blood made it to processesing and it is just a matter or re-sending results.Ugh.
I have also gone round and round with Olivia's cardiology office to get her scheduled for the ablation, Call this number, no call this number, no it is supposed to be scheduled at the office. Seriously, the are one of the top hospitals for heart issues in the county, you'd think they'd have this part worked out by now. Ugh.
Tomas has a cardiology appointment this morning to check on that right pulmonary artery, and maybe that doctor can shed some light on his labored breathing, although I suspect it is from the anemia.
For the last 8 weeks I have been watching him slide downhill; less stamina, lazy sitting, less and less scooting and more and more whining. It has been difficult because there was nothing for doctors to put their fingers on. Hopefully, now with the labs also showing a progressive decline they can figure something out. Preferably soon!

Christmas 2010

2010-12-27T21:07:00.000-06:00

It actually started on the evening of the 23rd. After her shower Olivia came downstairs and was about to sit down on the floor in my bedroom with Tomas and I, when she gasped and stared at me, "I'm having a heart palpitation!"
Of course she had taken off her event monitor for her shower and forgot to put it back on, so upstairs we both go flying. Mike comes running out of his office thinking something is wrong with the baby. But we managed to get it one her and get 2 good recordings. What a crazy, mixed up blessing. She has been wearing that darned monitor for 5 weeks and could not wait to get it off. She was especially worried about wearing her Christmas dress with it on. So you see it really was a blessing that she had a palpitation.
We sent in her event to the cardiology center at the hospital and the montor has been "resting" in the drawer ever since. I'll take it back next week when Tomas goes in for a checkup.

On the 24th the girls sang in choir at a church pageant and then at mass. It was bittersweet for me. Earlier in the week Tomas saw hematology and immunology and among other things they reinforced that Tomas needs to stay away from crowds and germs. Last year Mike and I had to split up since he was sick, and this year we did the same. I went with the girls for the children's mass, and he went to midnight mass. It was this amazing, joyful, triumphant service, but I was alone (girls were with the choir), and missing my men.
Thankfully that feeling did not last long, and we had a lovely Nochebuena dinner once we were home. The girls started their own tradition a few years ago where they open their gifts to each other on Christmas eve. It is so beautiful to watch this blossom as they become more aware of the joy that comes from gift giving.

and here is Tomas' gift to all of us!

Christmas morning I actually woke up before the girls. There is a first time for everything. We had a lovely morning filled with wrapping paper, chaos, and a baby who tossed and chased shiny bows across the floor all morning.

Christmas breakfast, Christmas dinner and The Nativity Story for Christmas evening. Really a wonderful day only mildly interspersed with medical stuff, which can wait until tomorrow.

There are a few things brewing and I am hoping I can make it through the rest of the year with no doctor's appts. In the meantime:

The King of Glory

2010-12-20T19:56:00.000-06:00

I'll update all the medical stuff tomorrow after another appointment, but it is stable.
Now, I met the most amazing woman outside the hospital today. What a spirit lifter! She adopted 2 special needs kids, with the papers being finalized two days AFTER her husband died. Within 2 minutes of talking to her I could tell she was doing exactly what God had called her to do. She just radiated it. I'm telling you, we were in the parking lot and she just blew me away. At the end of our beautiful talk we hugged like we had known each other for decades. I don't even know her name. I am so very, very grateful for that encounter.
The King of Glory comes
the nation rejoices.
Open the gates before Him,
lift up your voices.

The wait is nearly over, Advent in nearly finished, and here in this house we will be forever grateful for two tiny babies. The One who saved us all, and the other who, in his weakness, has opened my eyes to the majestic strength of the spirit that dwells within us all.

Making rash decisions

2010-12-16T10:22:00.000-06:00

Sorry, couldn't resist the pun.
The rash is back- the interesting, unspecified, unidentified, not-going-away rash. Last week I took him in because it looked pretty bad and a few of the spots were weeping. The pedi said it was definitely NOT viral and gave me a steroid cream to put on it. This week, because the steroid cream was not working and it is spreading, I took him back in. The pedi got the other pedi to come take a look at it, and now it is DEFINITELY viral. So annoying, could someone just find out what it is! Last go round I had an appt. with a pediatric dermatologist but the wait was so long that by the time the appt came up the rash was gone and I cancelled it. Now I could kick myself, but c'est la vie. I will try again.
New developements:
1. His right pulmonary artery is slightly enlarged. This comes from the new pulminologist who finally looked at Tomas' x-rays. The newest x-ray is about 6 months old though so we have a follow up in early Jan with cardiology to check it out and try to avoid that pesky pulmonary hypertension that plagues so many of our DS babies.
2. After both my husband and daughter mentioned that Tomas' pee smelled like maple syrup I finally brought it up to the doctor. I had noticed but didn't realize it was that noticable or that it mattered much. Turns out there is such a thing as maple syrup urine disease. It is a METABOLIC disorder (no surprise there) that comes from the bodies inability to break down certain proteins. I have to wait for the next syrup-smelling pee (it is only intermittent) and then collect and freeze urine. This will be the second time I have frozen pee-pee in the back freezer. Just too weird.
3. One of his abdominal hernias is opening up again. This is brand new, as in I just noticed the ball on his belly last night. It is still small, about 1/2" across, and I will just monitor it for growth. After the last surgery, Tomas' surgeon told me "the next time I go in I'm using mesh." I thought, "What do you mean next time?". Apparently he knew the fix was only temporary. Hopefully, we have a while before that needs to be addressed, but at least it is something we are pros at dealing with.
4. He has always slept poorly, but the last two weeks he has outdone himself, and caused me to fall down in the garage the other day out of exhaustion and dizzyness. So 2 nights ago, after checking with the pedi, I started giving him melatonin. The first night it did not help at all and on top of it he had a rather long and low central apnea episode that I had to stimulate him for to get his O2 levels back up. Not fun. The pedi said it could be from the melatonin as most of Tomas apnea is obstructive (he has very short central spells every once in a blue moon, but none like that night). So last night I gave it to him one more time to test it, and it went better. He slept like his previously poor-sleeper self, and no central apnea episodes. Which felt like a night at the spa for me. I'll keep using it and see if things continue to improve.

Other than that the regular stuff continues, blood counts low, immune system low, waiting on the metabolic tests to come back.
But you know I need to leave you with a smile (and a kiss):

I shop at Aldi's because...

2010-12-03T20:53:00.000-06:00

there is only one kind of whatever it is you need/want. No choices, no decisions. It is this one or nothing. I love it. Here's why:
Tomas started running a fever the night he got all those vaccinations. This paralyzed me. A while back the pediatrician told me not to give him Motrin/ibuprofen because of his platelet issues. Well, now can I give him Tylenol/acetaminophen due to his liver issues? In the end I went with the Tylenol - how bad can one dose be? But really, does everything have to be this involved?
By morning the fever was back, which opens up a whole other can of worms. It is called neutropenic precautions and fever protocol. I am supposed to call in every fever Tomas has to the CCBD (center for cancer and blood disorders) clinic, and if it is after hours I am supposed to bring him to ER for any sustained fever over 100.4 or any single temp over 101. Well his temp had been 100.5 for about 12 hours at that point but at least it was during office hours. The dilemma was that I was pretty sure it was from the vaccines and didn't feel like having the CCBD tell me he needed to come in for labwork and possible IV antibiotics. So here I sat for most of the morning fighting with myself about the fever. Is it from being sick, or is it from the vaccines, do I call, do I not call. I split the difference and called the pedi, who told me it probably was from the vaccines (whew!) BUT that I needed to call the CCBD anyway (why I didn't see that one coming I'll never know).
I called them around 11, and when I hung up the DME called and wanted to service Tomas' O2 compressor that afternoon. Fine, my husband was out that morning but would be back in the afternoon. I had to leave the house by noon to get to a 1pm GI appt. But it was now 10 mins till noon and no call back from CCBD yet, and Tomas still had a low fever and just looked under the weather. Another dilemma! Do I go, or not go. I really needed to talk to the GI and get things moving and sorted out. This time I decided to cancel since Tomas was tired and just feeling blah. By the time I called though it was 12 and the office was shut for lunch, we are the first appt. afer lunch and there is no way for me to cancel until 1. So I felt bad and decided to go. One problem, my husband wasn't back from his errands yet which meant the girls had to go with me. Called him on the way and told him the compressor guy was coming in the afternoon, met him at Walgreen's (getting flu shot) so I can give him the girls and then they needed to hurry back to the house. CCBD called while I was driving and said to monitor his fever and call if it didn't resolve, and to come in right away if his labs came back with an ANC under 800. He had labs drawn the day before but I didn't have the results yet.
Ok, girls were handed off and I went on to the GI office. The three of them got home just 5 minutes before the oxygen guy showed up, so that all worked out.
I am so glad I went.
He is such a conundrum of a doctor. Absolutely abhorrent at calling back, including calling other doctors back; but, oh so frank and straightforward at the office. I told him that the immunologist thought Tomas' illnesses were due to nutritional deficiencies. He said to simply look at Tomas tells you he is not malnourished. She is saying that because he is on a blended diet and it is an easy thing to blame, as opposed to digging deeper to find the problem. And by saying it is dietary, it kicks the ball back into GI's play and she is off the hook. Even if none of that is true, you've just got to love a doctor who can be that honest. I asked about the calcium results on Tomas' labwork (it has been low the last few draws). The immunologist thought he needed more calcium. I told the GI he was getting tons of calcium. He gets 5 grams per kilo and normal dietary guidelines are under 4. He said it is not from his diet it is because he is leaking antibodies out all over the place, after all his antibodies are only at 50% of normal. He said there is no way that Tomas' diet has anything to do with his health. If he were eating the things he gets through the tube by mouth no one would have anything to say about his diet. On a side note here, if he were only getting formula by mouth at two years old everyone would be up in arms at his diet. I fail to see how the method of delivery changes that, but it does. Very few doctors are supportive of a blended diet, mostly because they think parents can't get it right - but take a look at how your average oral-eating toddler eats - I don't see many docs ordering parents of those kids to ONLY give them Pediasure, as it is nutritionally balanced. But I digress...
Anyway, diet not an issue. Great, neither I nor the pedi thought so, now what? Turns out there is a new blood serum test to check for the disorder we all think Tomas has. The Mayo clinic in Rochester, NY runs it and I can just have him drawn here at my local lab. Awesome!!! It has a high false negative, so if it comes back as a no Tomas will still have to have the liver biopsy, but if it comes back positive, then we are done and do not have to go piercing organs (doctor's words). The GI said to leave him on J feeds for now, even though we are not sure if that is complicating getting a diagnosis. Honestly, no one knows how much Tomas having been on continuous feeds for most of his life is masking whatever is going on. We do know that for many varied reasons every time we try to bolus feed him we end up back on J feeds. He said that switching to G feeds, even continuous, would be too dangerous right now. The stomach doesn't empty constantly, even with normal motility, it fills and then dumps, rests and dumps, etc... We have no way of knowing if Tomas' hypoglycemia is from the stomach dumping and his body producing too much insulin, or if it is from his bodies inability to pull sugar stores from the liver during the times the stomach is not emptying. So crazy.
One other thing we discussed was the bloody discharge from Tomas' stomach and bloody seepage from around his stoma. The GI said it is probably granulation tissue in the stoma path and the only way to fix it is to remove the tube, cauterize the tissue, and replace the tube. I asked if we really needed to do that and he said, "Nope, we have much bigger monsters to chase, especially since he is not anemic." Unfortunately that was before I got the results of the previous day's labwork. Turns out Tomas is anemic and his hemaglobin is lower than it has been in the last 14 months. I'm not sure if I want to pursue it though. He is only slightly anemic and the whole removing the tube, replacing the tube thing is really traumatic for him. Luckily, he gets labs done often enough that I can keep and eye on it and pursue if necessary. And to finish off a very informative day his ANC was 1200!!! Woohoo - no add on trip to CCBD!!! His fever is still off and on, but the pedi said the vaccines could cause a low fever for up to a week, and with an ANC of 1200 I do not have to worry about him going septic in a matter of hours. What a relief.

Part of the beauty of this blog is it allows me a "mental unload". Typing it all out gets it out of my head and helps me put an order to all the information I get thrown at me. Before I find the time to sit and type all this stuff out my brain just sort of bounces all over the place. But seeing it here, and reading it in some sort of (I hope) cohesive manner helps so much. Thanks everyone for listening, and thanks even more if you can have the time to comment. I know how hard it can be to keep up with all our blogging families, so a very simple and heartfelt thankyou.

In a funk

2010-12-01T17:13:00.000-06:00

I can't believe it has been two weeks since I posted. Now it seems so long I can't imagine how I'll catch up, but I was just needing a break, and in a rather great funk, mostly thanks to one doctor.
Two weeks ago Tomas was at his hematology follow up and that doctor wanted to go ahead and start the IvIg treatments to boost Tomas' immune system. She went through everything involved with me and just wanted to check with the immunologist to see if there was anything she wanted done before we started.
A few days later I get a call from the pediatrician who told me that the immunologist called and wanted Tomas to get certain vaccines and the flu booster, but that she DID NOT think the IvIg was necessary, since he never had a case of pneumonia.
This left me in such an awkward place. I have worked so hard to keep him from getting pneumonia. Breathing treatments every 3 hours, including through the night, rushed visits to doctors and ER's; antibiotics after antibiotics, oral steroids when the inhaled weren't cutting it, and now to find out, if I had let it go a few times and fester into pneumonia we could be getting some help for his immune system this winter. I have not met with the hematologist again so I don't know if her plan is to still go forward, but I fear that the immunologist's opinion carries a lot of weight.
Tomas is sick again, he got sick right before Thanksgiving and is just not getting better. Before the immunology comments I would have had Tomas at the doctor on Friday morning, but since I felt like being aggressive in his short term care was actually being detrimental to his LONG TERM care I waited. He just had his typical stuff through the weekend and early part of this week. Barking cough, cruddy nose, yellow goop from the G tube, and increased d-sats at night.
This morning though he started pulling in on his left side, and something snapped inside me. What the hell am I doing? I'm waiting for my kid to get really sick before I go and do something about it? It's like those (otherwise healthy) kids you read about that die from the flu. Fever of 104 for days and parents were just waiting to see if the kid got better, and you think, why did they wait so long? That was me, I was letting this doctor get to me so much that it was compromising my son's health. Ugh...So I snapped out of it and took him to the doctor. He has a sinus infection, the croup, and needs an x-ray to see if he has pneumonia (the doctor doesn't think so - but something is causing the increased labor in breathing - he said there was some extra tissue or something after one of the surgeries and maybe that was inflamed by the infection - not quite clear on that one yet). The doctor did say this was the second time he had the croup in about 5 weeks - could you pass that on to the immunologist please?
He was able to get the vaccines that the immunologist wanted, she will check his titers in mid-December to see how well his immune system reacts to the vaccine. Those 5 shots combined with a finger prick, a toe prick, a heal prick, and a blood draw added up to 9 sticks for him today and he was not happy about any of them!
Also gumming up the works around here are those pesky liver enzymes. They were very elevated, moderately elevated, normal, mildly elevated and now back to moderately elevated. The liver MRI came back normal, which is great in that there is no visible liver damage but not great in that it leads us nowhere. The liver biopsy, was on, then off, then on, then off, and after a call from GI yesterday asking to bring Tomas in, it is back on again; that appointment is tomorrow. His liver enzymes with today's draw were higher than the last draw so they are trending back up again. Add to that dehydration on the last two lab draws (even though he gets plenty of fluids) and low protein levels (even though he gets plenty of protein) and you have a big bag of who-the-hell-knows.
That also means he will need a specialized platelet test that can only be done in Dallas before he can have the biopsy done. I was in Dallas yesterday for Olivia and could have had it done then, but the GI called yesterday while we were away. So one more trip back to the Big-D. And why, you may ask, was I in Dallas Children's for Olivia? Because she needs to have a cardiac ablation.
She has had heart palpitations on and off all her life (she's 10). About a month ago she had one that was pretty severe and lasted almost 40 minutes and would not resolve with any vagal maneuvers that she had been taught. Her heart was racing over 230bpm for most of that time (thank you Tomas' pulse ox). Mike and I were about to call EMS when it resolved. After a visit to the pediatrician and a pediatric cardiologist, we were referred to a pediatric electrophysiologist. Never heard of such a thing? Me neither. She is a specialized cardiologist who deals with the electrical impulses of the heart. Cute huh? Anyhow, the running theory is Olivia has SVT (supra ventricular tachycardia). She is on a halter monitor until we get an episode recorded and then it is off to the cath lab for her. For a variety of reasons medication is not an option for Olivia, and the doctor's are all saying that the procedure is very safe. She will have to stay the night, because we live far from the Dallas hospital, just for monitoring. That makes me feel better anyway, I'd rather her be monitored that first night. I suppose if the starts align themselves properly we can have Tomas' biopsy and Olivia's ablation at the same time - a two for one night at the hospital. Stranger things have happened I'm sure.
It hasn't all been medical here though, we have managed to live a little. We are becomming regulars at a local motorcross park, and are getting pretty good at setting up a day camp. Overnight camp is definately in our future, we just need to work out the oxygen, charging the pump, and wait for it to not be 25 degrees at night before we give it a go.
So that is what I'll leave you with, some great pictures of a great day with a great family, who has a great God to keep them going when things aren't so great:

Well, that was fun (NOT).

2010-11-17T21:29:00.000-06:00

Tomas had his swallow study and it was a disaster, but not for the reasons I thought it would be. The last time I fed him on anything of a regular schedule was about 6 weeks ago. He ended up with bronchitis again so the last pulm doctor put him on hold until after the next swallow study. I gave him a good long break before I even tried to just give him a spoonful here and there. About 3 weeks ago I tried to give him some baby fruit, and he turned his face away. A few days later and he turned his face a way, but with moderate amounts of effort on my part he did take 3 or so spoonfuls before I stopped so as not to make him sick again. I remember thinking while this was all going on that it has finally happened. He is getting orally averse. After almost two years of no real mouth eating he is done with it, plus I think he's finally figured out it hurts and he doesn't like it.
Flash forward to this morning and he wanted nothing to do with the bottle, or the spoon. I tried a few times but there was no coaxing him at all. Finally, the feeding therapist forced a syringe into his mouth to make him swallow, he spit it back out. The test was called off and I got to clean off my barium covered baby.
The report (the therapist told me) is going to say he is orally averse and needs intensive feeding therapy, just so he can come back and have another test to see if he is actually allowed to eat. Wrap your head around that one.
Now comes decision time, I talked to Mike and the first thing he said was we needed to get him therapy right away otherwise he won't eat. I am so torn over this. I can see both sides, the first being that we need to teach him how to eat and to learn that eating is not going to hurt him (providing of course that he is NOT aspirating - which we can't tell until he eats - bizzarro). That means intensive therapy and fair amounts of torture as he clearly does not want food in his mouth. With a fair amount of work we could get him to the point where he can be tested and then see if it is ok to continue feeding him or not.
The other side is why bother right now? He is still going to need the tube until we figure out the metabolic issues, so why try to get him eating. Why not just wait until he is 3 or 4 and we can use (a small) amount of reason to lessen the severity of trauma involved in learning to eat.
Ugh... I just don't know, it can so go either way. On one hand, he could get a metabolic diagnosis in, let's say, a month, and without feeding him for that month I would lose what (very) tiny hope I have right now of getting him to take a spoon. On the other hand he has only been sick once since we moved back to continuous j feeds (in August). I can't discount that.
Out of curiosity I tried tonight to feed him. After much happy talking and cheering I did get him to let the spoon in twice. He spit all the food out but he did open his mouth for the spoon. So maybe that is the happy medium God is trying to show me. Keep him allowing the food in there, but don't force him to swallow it. Not yet anyway.

"The stander!"

2010-11-16T21:26:00.000-06:00

This is still hard for me to believe but here is the evidence. This morning he actually clapped and got excited when he saw it - weird little person that he is!

He has a swallow study tomorrow morning. I'm not looking forward to it. But the new pulm doctor wants new data. His last study was Sept. '09. Wish us luck!

Standing frames and label makers

2010-11-15T22:49:00.000-06:00

The standing frame came three days ago. I was so afraid of this thing. I thought for sure he would hate it. I thought he would fuss from the minute we tried to strap him in until I finally let him free 5 minutes later.
I was wrong. Really wrong.
The first time the PT was here and set all the measurements and heights. We laid him down on it, affixed all the straps, and then inclined him. Not a peep. We put toys on the tray for him to chuck off (his favorite game) and he just chucked away. No fussing. 10 minutes go by, 15, 20. Really, who is this child? He won't bear weight on his legs for more than 5 seconds, usually less, at any other time. At the 25 minute mark he started to rest his head so we took him out. All in all almost half an hour without one complaint.
It has been 4 days now and he's gone for half an hour every day without a peep of complaint. This morning he actually smiled and laughed. I am so shocked. Granted there is not much weight on his feet, most of it is distributed throughout the frame, BUT his feet are touching the plates, and he is strapped in and can only move his arms and his head. My mother in law thinks it is because he likes the view. She may be on to something. usually he sees the world from 6" off the ground. There is no hint of weight bearing without the frame, just as before, but way I am so thrilled to have a way to work with him that he doesn't complain about!
As usual he has a few medical things going on, most of it just ongoing issues. He is intermittently bleeding from his G port though, and that is new (at least in the recent months). It is not just the "tube irritation" blood that I sometimes find, but actual bleeding from inside the stoma. Just very faint though. I was collecting gastric acid (as exhibit A) to bring to the doctors with me later this week when The Maniac struck.
He had been away on a business trip for a week. On Friday evening I purposefully cleaned and shined the bathroom counter tops and put my graduated cylinder of bloody goo in the back corner by my sink so the maniac would not pay any attention to it. He got home after midnight, and Saturday morning I got up to make breakfast. He got up to clean the bathroom. I don't call him a maniac for nothing. Really, pancakes and bacon are cooking? - great he's got time to scrub a toilet! Usually, this is a good thing as scrubbing toilets is not high on my "like" list.
A while later I went to do Tomas' morning stuff. I had his acid in the syringe and went into my bathroom to add it to what was already there. The cylinder was (any one guessed it yet?) empty!!! Really? I cleaned the counter tops the night before to prevent this exact thing! What was he thinking, that I keep medical bottles around with bloody goo just for fun? Did he even ask before he dumped it? And the kicker is do you know what he said when I was like "what the hell were you thinking?"

"Well, you should have put a lid on it and labeled it SAMPLE"

Patient Abandonement

2010-11-08T18:58:00.000-06:00

Since Oct. was Ds Awareness month, and I was writing about Tomas' arrival I didn't want to interrupt with my doctor drama, but now that it is November - drama away!
On Oct. 29th I got three letters in the mail (one for each of my kids) from their pulmonologist. They all said the same thing, that she was shutting down her office effective OCTOBER 1st and moving out of state. The medical records were with her and if we wanted them faxed to another doctor's office she gave us a fax number and a form to fill out. That night I was in a panic - how could I get another pulmonologist that fast? The ones at the children's hospital had a 4 month wait and winter is on its way! The following morning at 8:10am I get a phone call from the pediatrician that he got a very curious letter from the pulmonologist and did I know anything about it? I told him I got the same letter - he said, "Well then, we need to get Tomas a new lung doctor ASAP." No kidding, not to mention the other two who have asthma and the older one who has fairly significant asthma, but yeah, I need a new doc ASAP for little man all right. He gave me the numbers of some people and said if I had trouble (more than a week's wait) to call him back.
Amazingly, when I called the first preference of the pediatrician and explained the situation, I was able to get an appointment for today. That was so perfect, the girls have to wait a bit longer since they weren't as urgent, and will go mid-month to get established, but Tomas was definitely the priority. Next up, getting his records faxed to the new office. I faxed the form to the number on the letter, NO ANSWER. I called the old office number - no answer, I tried the old fax number - no answer. I called the pediatrician - he had no more luck than I. I googled the number the pulmonologist left, it is a fax number for a non-medical office in New Orleans. I tried the phone number connected to that office, but NO ANSWER.
That's it -she's gone, and has records for all my kids and I can't get them. My fantastic pediatrician copied what he had and thought was pertinent (that alone was 80 pages - can you imagine what the full file must be like?) and I picked that up on Friday to take with me today. When I got to the new doctor's office and handed him the records and old x-rays (which thank God I kept a copy of!) he said - "So there's no way to get his records?" Nope, not that I can tell. He said, "Well, you're not really supposed to do that. She didn't give you any warning?" Nope. I took Tomas to her on Sept. 28th for a sick visit. She shut down Oct. 1st. He said "It's like patient abandonement - if she hadn't left the state I would...(he didn't finish)"
And I thought, "That's it." That is exactly what I feel like, it's horrible. No office notes, no plans for treatment. Nothing. We are starting completely over. And she was supposed to file an appeal for his Synagis since he was denied this year. I have no idea whether she did or not. The worst part is she was a fantastic doctor. She took hours when needed to care for him and go over everything, and called to check on him (or Olivia) sometimes even pretty late when she had finished rounding at the hospital. I am assuming something horrible happened because nothing else makes sense. But not having any working numbers also makes no sense so I just don't know.
The new pulm was very good and needs to go over what I gave him today, and then get back to me. Of course the word trach was tossed around, because when you think Ds, obstructive sleep apnea, and aspiration, you think trach, but I hope that he'll come around the way the others did. If Tomas should need it, then so be it, but right now I don't think he does. Time will tell. He also wants to move up the sleep study - it was supposed to be in January. He wants it much sooner, since pulmonary hypertenstion is a worry. Right now we are just in the evaluate mode.
Fun, fun, fun!

The (really) good and the (not too) bad

2010-11-04T16:18:00.000-05:00

Good first - he's home, and had only a tiny bit of trouble with anesthesia. The doctor was ready for him and did something with the meds when Tomas started dropping his heart rate. So no intervention necessary this time - hooray! MRI went great and we should have results by Monday.

Bad - No platelet study as Tomas would not bleed today. They sent in the expert for difficult sticks and after 3 tries even she gave up. The game plan was then to draw out from the IV after it was placed, but that didn't work either. Nothing. Nada. So we have to go back another time to do it. The bummer of that is that particular test is only done in Dallas so I'll have to drive back there sometime soon. More bad - his blood sugar was already starting to drop after only 2 hours of fasting. He had been on pedialtye for 3 hours previous to the fasting but there just doesn't seem to be enough sugar in pedialyte to help him. That means his blood sugar issue is still there, we are just masking it with the continuous feeds. He stayed on a D5 drip through the procedure to keep his levels stable, and I was able to re-start his feeds before we left.

Thank you all so much for your thoughts and prayers. When I checked the computer this afternoon and saw all the messages I was so grateful. It is so uplifting to know that you all remembered him today.

A few weeks ago at a pumpkin patch:

MRI

2010-11-03T20:30:00.000-05:00

During October's Tomas story I purposely didn't blog about any medical stuff. It was a long month with much discussing and little headway. Doctors were able to rule out one disorder (Schwachman Diamond) but there are still a few on the table - some of which are pretty scary. Finally, after much back and forth, tomorrow Tomas has an MRI for his liver. Hopefully, this will give us some sense of what is going on with his liver enzymes and lead us to an answer for the immune system and neutropenia. After the MRI (if all goes well) he is having a special platelet aggregation study done to try and find a reason behind his petechiae. It could be a big day for us in moving forward toward answers.

The last time he went under he needed an injection to get his heart going again and bagging. I'm a little nervous but not too much as they know him pretty well at the hospital and are always ready for him. But if you could remember him in your prayers tomorrow I would be most grateful. Thank you!

Frog Scooting

2010-11-01T21:04:00.000-05:00

His therapist called it "interesting". She is bringing a standing frame next week since he still won't bear weight on his legs, and she doesn't think this is an effective means of mobility. Personally, I could care less right now. Maybe if he was, oh let's say 5 or so and still scooting about I might have trouble with it, but for now it is pretty cute. I'll try the frame but I already told her I have no intention of torturing him with it. We did run into a snag with the cooler weather, though. Socks on his feet don't give him enough traction, and shoes make his feet stick and he can't move with them on. I tried some moccasin socks I found at Target but they are only sticky on the bottom and he digs in with the side of his feet. I may have to get creative!

The many faces of Tomas

2010-10-31T15:03:00.000-05:00

God and Tomas, epilogue

2010-10-29T21:24:00.000-05:00

There is so much more to tell, so many more ways God has walked and is walking through this journey with us, but I wanted this to be the story of the beginning; of how we came to be where we are. Each of us was stretched, and shaped, and reformed individually, and yet our family is also something different than what is was before, something better. This experience, and here I am speaking of the medical complications that abound - not the DS, has been so grueling and so exhausting and so not over with that finding something positive to say should be very difficult. It should be, but it isn't. Tomas is exactly what we never knew we wanted. He has taken our family and carried all of us to a place where every smile matters, where the days breathe with possibilities, and joy reigns supreme. It was not the end of the world - it was the beginning of one.

God and Tomas, part nine

2010-10-26T17:54:00.000-05:00

On the way out of OR I got to swing by (in my bed) NICU and really take a look at him for the first time. He was so small. I touched his toes and just looked and looked, as much as I could in a drive by viewing. He had a tube down his throat to drain out what was in his stomach because it had nowhere to go.
Since it was past midnight when I was brought to my room, and my friend was beat, she decided to stay with me and help me out. I am so glad she did, I can't imagine being there by myself that night. The nurses came in and did their thing, and by 8am I was going to get my rear-end to NICU. I got out of bed and tried to dress and clean and all the other things you need to do after a c-section; and let's just say my friend and I are bonded for life and I can never disown her because she knows too much. And thank God for narcotics so I don't have to remember any of it vividly - just a vague recollection.
She wheeled me down and I had my initiation into NICU scrubbing. We went into his room, and after we were settled the nurse put him in my arms. I got to hold him for the first time, and the wires and tubes just disappeared. They melted into nothingness, away from the space that was just him and me. What a glorious moment!
After a bit we went back to my room and my friend got me settled and then headed home. My husband had caught a flight out of CA that morning but still wouldn't be there until well into the afternoon. Around this time the phone calls started rolling in from the NICU nurses and doctors about all the diagnosis they were finding. What we thought was a healthy heart based on pre-natal screening actually had 4 holes in it, but they were small and expected to close on their own. Later that morning, another call came from the surgeon, he had convinced the hospital and some nurses to operate on Sunday. That was the next morning. I had someone wheel me to NICU and asked for a priest. Within an hour Father Scott from a nearby parish was there, and Tomas was baptized. Just him and me and a tiny syringe with a few drops of water. It was an emergency baptism - because he might not make it through the surgery.
A little later two other friends came to visit, we were on our way to NICU to see the baby. The elevator doors opened and who steps out - my husband! My friends graciously bowed out, allowing my husband to go in and meet Tomas in a private moment. We went in and looked him over. Tomas was not a magazine cover newborn, and it had nothing to do with DS. Oh, he was cute all right, but just had a few quirky things going on. For starters, he had no eyebrows - not a hair in sight. Then his cranial plates were overlapping. When I first saw this I thought it was a DS thing, but the nurses assured me it was a baby thing, and that they would move and shift and eventually fall into place. At the time my husband came in they were overlapping right over the center part of his head and he looked like a little Klingon baby, only with no eyebrows! I could tell he was nervous that this was all permanent stuff so I did my best to reassure him. He didn't want to hold him as there were too many wires and he was too afraid. We just sat there for a long time and watched, and eventually headed up to my room.
That evening was spent logistically planning for the surgery, and who would be where. He left me in the morning to go pick up the girls and his mom (who was staying with them at our house). They all met me in the waiting room for post-op, and then he and I walked with Tomas' isolette back to pre-op to say goodbye. That moment is so very, very hard. We've done it five times now, and it is never easy, but that first time was a huge test for us. How much did we mean it when we said we would put our faith in the Lord, and let go?
One huge blessing was that the post-op room was empty except for us. It was Sunday and no other surgeries were scheduled that day. We prayed and waited and entertained the girls. It was so strange, I was still in a wheelchair and on an epidural pump, I was only 32 hours post-op myself. Adrenaline is a gift from God.
The surgeon came out and said everything went very well, and that he had placed the g-tube "just in case" as we had discussed. What a huge Godsend that turned out to be!
A few days later, and I was in NICU alone, and he was not doing well. He was under jaundice lights, and completely swollen from the surgery. Not breathing well, and certainly not eating. In the far back corner of our shared room was an older baby whose mother was there every time I came to see Tomas. The baby was always on his stomach and had tons of toys and blankets under his crib. I didn't ever pay too much attention, and the hospital was pretty strict about its privacy policy. But I had learned about the butterflies.
At each room's entrance were butterfly stickers with the baby's last names that were in the room. One day I was walking towards Tomas' room, which normally housed 4 babies, and noticed there were only 3 butterflies that day. When I got closer the front corner curtain had been drawn, and I knew. The sadness and darkness just emanated from behind that curtain. I still couldn't touch Tomas but I moved my chair as close as I could to his isolette that day, and I hung my head for the family next to me.
A few days later the far back corner baby's father was there when I walked in. I had never seen him before, just his mother, and quite frankly he was scary. He looked like a gang member. His world was as far from mine as you could possibly imagine. Pants around his hips, gold chains, tattoos, funky hair - you name it, and he had it. I just moved to my small corner of the world and sat next to my baby. A little later I heard him talking to his son's nurse, "but can't they just do a lung transplant?" The nurse muttered something back which amounted to there was nothing more to be done. And my heart broke as that wall of fear came crumbling down around it. This man was begging for his son's life. It was the first wall that God used Tomas to tear down for me. About a week later and that baby's butterfly was gone and his curtain was closed, and I hung my head again. this time for the gang member father who was just like me.

God and Tomas, part eight

2010-10-20T00:15:00.000-05:00

Some days after the first week in January my husband told me that the division he was now working for was having its annual meeting out in CA the following week. Did I think he should go? How was I supposed to answer that? He would be home by the 19th, and the c-section wasn't until the 28th. Well, I'm the go-for-it kind of gal so I said sure, go ahead. He then demanded to know if I was going to have the baby while he was gone. He was serious, he wanted me to tell him when the baby was coming. We went back and forth for a while, and I left it with Murphy's law would reign. If he left I would have the baby, and if he stayed I would not. He finally decided to chance it and left the early morning of the 16th.
The late morning of the 16th I had a regular OB appointment, but was also having those pesky contractions again. She checked me and I was still closed tight but told me to go home and take two of the muscle relaxers the hospital docs had given to me a while back to relax my uterus. If they didn't stop I needed to go to Orlando and get checked out.
I had my girls with me but as we were leaving a friend called to check on me, when I told her what was going on she told me to drop the girls at her house and go home and try to sleep a bit, that she would bring them home later. So I did. I went home took two pills and laid down. That was around 10am. At noon I woke in sharp pain from contractions, but they felt weird, just different. Even though I had two c-sections for the girls I labored with the first so I knew what they should feel like, and these hurt, but in a strange way. So I called another friend. A few words about her, we met when our girls were on the same soccer team. She was and is a pediatric nurse. I remember thinking, "hmmm, she would be a good friend to have". Well, that was 5 years before that phone call and she was a great friend for many, many reasons. She had agreed to be my backup "doula" in case anything happened while my husband was away. Poor girl.
I called her at noon and told her that I felt funny and I thought I should go get checked out in Orlando. She had her daughter with her and was babysitting her nephew as well. She called a friend to see if she could take her daughter to an afternoon activity, and she called her mother to see if she could drive up and watch her nephew until his mom came to pick him up. Well, friend said yes, and mother said yes, so my friend said yes she could take me.
A little while later I was driving to her house. I tried to time it as best I could. Contractions were about 10 minutes apart at that time and she lived 20 minutes away. So I waited until one set was over and then left, hoping to make it there with only one set while driving. Well, I had only one set, but it was on the bridge that took me off the island. I remember being on the stupid bridge and doing those stupid breathing exercises and please, oh, please just let me not fall into the river. Luckily it only lasted about a minute and then it was clear sailing the rest of the way. I got to her house and she was finishing up the last minute instructions with all parties involved, and then we were on our way.
I got to the hospital and got all strapped in and monitored and the trauma doctor came in and checked me, and said everything looked good. Just watch me for a little bit longer, but then I could go home. Phew, close call. I hadn't even called my husband because we had so many incidents like this that it didn't seem worth it. My friend went to get a snack and when she got back I begged her for a cookie. Up until then I couldn't eat anything, but since the doc had just said I could go, she gave me one. Well, we should have known. Really, two grown women couldn't figure out that if you give a pregnant lady a cookie while she is hooked up to fetal monitors at the hospital that even though the doctor just said she could go home, it was never going to happen?
A few minutes after "the cookie" the fetal heart rate monitor began to nosedive during a contraction. Another word about my friend - she was a labor and delivery nurse before she was a pediatric nurse. Did I forget to mention that? Nope, just saved it for the good part. She jumped up from her chair and began flipping me like a pancake from side to side, and mashing my belly to make the baby's heart rate climb. A few minutes later and it happened again, and then she happened again, and then the hospital nurse came in. Not until after two heartrate drops did the staff come in. The nurse put me on oxygen and then said, "The chances of you going home tonight without delivering a baby just went to very slim". Excuse me? I think that was around 8pm or so. Frantic phone calls were made, her husband, my friend who had my girls, and my husband. My friend with my girls was going to bring them over to my neighbors house and they would spend the night there, another neighbor had a key to my house and let them all in to get some things for overnight. Her husband had already picked up their daughter and fed her some atrocious dinner, but they would be fine nonetheless.
My poor, poor husband. Did I not tell him? He called a bunch of places but to get from CA to FL is impossible in less than 6 hours. It takes almost that just for the flight. So I told him to let it go, get on a flight the next morning, as there was no way he would make the birth anyhow, and just get there when he could. Next the nurse came back in and told us the docs were going to do the c-section that night as it was too risky to the baby to go any further. Then she asked me when was the last time I had anything to eat. Well that did it, a highly tense situation degenerated into fits of hysteria over that damned cookie. Here I was, about to deliver a Down syndrome baby with a major birth defect, my husband was clear across the country, the baby's heartrate dropped with every few contractions, and I couldn't stop laughing. I'm sure they taped a sign "Raving Lunatic" outside my door.
We got moved upstairs and waited for an OR room to become available. The nurses came in and out and long enough went by that the cookie was no longer an issue for anesthesia. I got wheeled down to OR and when they opened to doors and brought me in, it was so crowded! There were so many people there! The anesthesiologist, the surgeon and his assistant, the neonatologist, and at least 4 or 5 nurses. That was why the doctors pushed for the amnio - they were ready for Tomas. My friend sat up by my head and comforted me. As the surgical team came closer, she looked over the curtain and said, "Dr. So-and-So?". Turns out she knew him, she was one of his nurses before she left the hospital, and now he was at the women and children's hospital teaching something (I can't remember), they chit chatted a tiny bit (talk about surreal) and then everyone got down to business. But my friend leaned in and whispered that I was in good hands, and that felt nice.
This was it, all those months, and here we were. For so long I had tried to keep him inside. I knew it couldn't stay that way much longer, but he was safe as long as he was in there. Not anymore, with the heartrate drops it was now more dangerous on the inside than it was on the outside. A few tugs and a bit of pressure and at 11pm exactly he was born. No cries at first, and then just some pathetic kitten sounds. The nurses worked on him and my friend went to take pictures. She came back to tell me his legs were bent up with his feet over his shoulders (like any good DS baby!), and that he was very cute. The neonatologist came to tell me that the baby did, in fact, have DS. I remember thinking I didn't know that was still unresolved. He told me he was stable but that they needed to get him to NICU quickly. The doctor brought him over and with genuine warmth placed him by my face for me to kiss him. He was so tiny, but his little small face was just perfect. There I was, loving him on the outside, just as I had prayed for.

God and Tomas, part seven

2010-10-19T08:21:00.000-05:00

The next few weeks were still pretty rough, but mostly from a medical standpoint. I was at the doctor or hospital (for the NSTs) at least 3 times a week. Most of those visits took me down that winding drive to the bridge across the river. Every time I went a bird or birds flew with me. Never again in a triangle, but always they were with me. I remember knowing at the time who they were from and why they were there and I was so very, very grateful.
At the visits, half of the time someone didn't like what they saw and I had to go on to Orlando (the women and children's hosp - about an hour from home) to have a biophysical profile done on the baby. They would watch him on the ultrasound screen and see how many times he did this or that during an allotted time period. A few times he failed and I had to haul myself back there the next day for a repeat. And so it went, on and on, and over and over.
Life at home had reached a degree of stability, some parts were still a little shaky, like when we would try to imagine just how we were going to do this. We thought once the surgery was over and he was home, the largest part of our trouble would be raising a child with a disability. How naive we were! We also listed the house during this time, adding to everything the stress of keeping it uber-clean, and leaving whenever there was a showing. We made it through Christmas and had a good scare on New Year's Eve, but got sent home after a while. My c-section had been scheduled for Jan. 28th, the feast day of St. Tomas Aquinas, so Tomas would be our little boy's name.
Eventually, we all just came to roll along, and to take one day as it came. One day in early January, I was driving home from my doctor and realized there were no birds with me. None, I could not see any at all anywhere in the sky, much less along with me. I asked God what happened to my birds, I had enjoyed their company and the gift they brought with them. Just then I drove past a clearing in the mangroves and could see the river. It was flat, motionless, like glass. And every bird, quite possibly, on the island was resting on the surface. And I knew! I knew what it meant! I was at peace, I had found my resting place and I did not need the birds anymore. And that is exactly what God told me, and when God talks to you, there is no mistaking it for anything else. He said, "You don't need them anymore."

God and Tomas, part six

2010-10-17T09:43:00.006-05:00

The next morning another girlfriend came to pick up the girls to take them on a field trip. I had a doctors appt. that morning. Actually, at that point I had a doctor's appt. every Friday and non-stress tests twice a week.
We stood on my front lawn and I told her I could see the hand of God in the life of the baby, but I had no idea what He had in store for my marriage. I told her I was sure my husband would get there. He is a good man, and a faithful man, and I knew he would come around, but it was that time in between that would be very painful. I thought it would take a while, perhaps as long as waiting until the baby was born and my husband could see, and hold, touch him. She told me to let God handle it, and to let it be what it would be. They drove off, and I left a few minutes later for the doctor.
I was crying as I drove. Not sobbing, but a this-is-going-to-be-hard-Lord-because-I-really-love-that-man cry. The road led south down through a narrow part of the island and after about six miles curved onto the bridge that brought you to the mainland. My car had a sunroof, and about 1 mile into the drive I noticed three birds flying overhead. In a triangle. They stayed the entire time, right up until I turned onto the bridge. I had been shored up, and carried on eagle's wings.
The next day my husband took our daughters and our two dogs to his parents house. The dogs were going to stay out on their property while we listed our house and had the baby. Too much to take care of all at once, and his parents had graciously let us leave the dogs on their farm until we were ready for them. The girls were going for a visit, and the three of them were coming back the next day. I was too far along and still having contractions all the time, so no travel for me. He kissed me goodbye, and it was cold and we both knew it. I watched them leave. And I wondered, how long before he comes back to me, and I didn't mean in a corporeal sense.
Late the next evening they all came home. We tucked the girls in and went to another part of the house. And there he was, full of all the right words, and all the right hopes, and all the right determination. My marriage had been torn down and rebuilt in three days. "Tear down this temple and I will rebuild it in three days."
It is a different marriage now. It was always a good one, but quite simply, this one can not be severed. We walk with confidence now through this journey, that no matter what, we will have each other. And as for Tomas, the most tender part of my husband's heart is reserved for him.

God and Tomas, part five

2010-10-16T21:42:00.001-05:00

The call came from the geneticist on a Thursday afternoon while I was folding socks. She got right to the point and told me the amnio was positive. She asked if I was going to be ok, I told her I would be fine. She agreed with me, we had met before and she knew I meant it. I would be fine.
My husband was a different story. I have debated so much about whether to type this all out, but finally I decided that if I was going to tell the story of my son, than this was part of it.
That afternoon I was a wreck, because I had to tell him, and I knew he would grieve, and I knew it was all because of me wanting a third child. The guilt was incredible, so very, very heavy. I loved the baby and would not turn back the clock for anything, despite what was coming our way. I wanted this baby, not any other one, this little one that needed me more than any previous child. But I also love my husband dearly, and the thought of the pain I was causing him tore my soul in two. You see? I had chosen. My loyalty lay with my son, and I would not betray him, even to commiserate with my husband. I could not feel what he would feel and the thought of us being so very far apart on this devastated me.
I called a friend in tears, because I just dreaded telling him. And God was with me again. She told me the most amazing thing, she told me all the fear and apprehension I was feeling was from the devil, and I was letting him win. She told me God would continue to work wonders on our family and to keep my trust in Him. This was not a friend with whom I ever really discussed religion, not for any particular reason, it just wasn't part of our relationship. For her to snap me back to place like that was nothing short of the Holy Spirit working through her. I hung up, composed and ready to face what was coming.
My husband came home from a business trip that evening, and during our welcome home hug, I whispered "the baby does have DS". His shoulders collapsed in my arms, he stayed there a few seconds longer and then walked away. I went to make dinner, having chosen my path, and only prayed he would soon choose to walk it with me. That night was awful. He raged and he grieved, and I sat there. Completely in love with the little one inside me and therefor unable to share in anything he was going through. I felt our marriage bonds fraying, felt the ties that bind falling away. And I could do nothing to grab them and hold them tight, because I had chosen. I was on the other side, and I could only watch, and wait, and pray.

God and Tomas, part four

2010-10-15T18:19:00.000-05:00

Another month rolled by as Thanksgiving approached. Much of my husband's family and us were renting condos up in Williamsburg for the holiday. I went to the maternal fetal doctor for my monthly check up and he went back and forth on whether to let me go. Finally, he decided the driving wouldn't be an issue but I wasn't allowed to do much walking. The extra fluid put me at risk for early delivery. Believe me, walking was the last thing I wanted to do. I was huge, and I mean huge. We decided it was time to tell the family about the birth defect and the DS risk, since I would be mostly hanging out at the condo while everyone else was sightseeing. About a week before we left we told everyone. There was much lamentation and crying on their part, mostly about the DS, which some of them saw as a lifelong burden we would bear. I just tried to be patient and let them come around. Also. we decided to tell the girls, even though we did not know for sure if the baby had DS. But we thought they should know he might, and also we needed to tell them about the surgery. We had met with the surgeon and he told us to expect a 4-6 week NICU stay, possibly longer if the baby did have DS.
So I sat on the sofa one day, with my then eight and six year olds, and tried to explain the surgery and what Down syndrome was and how it would change what the baby would look like, and how it might make things harder for him to learn and do. They took it all in, and then the eight year old asked, "Mommy, just one thing - is he going to want to play hide and go seek?" That's it, all boiled down, without any grown up baggage - will he find joy in being alive. Will simply being be enough to thrill him? Yes, Virginia, there is a Santa Claus.
We went to Williamsburg and had a great time. It was freezing, even for them, that November. I sat on benches and in visitor centers and we all still had a great time. Occaisonally, I would walk around a little with them, and once I even stayed behind at the condo and let all the rest go have fun without me. That was my initiation into the frustrating labrynth of medical care and insurance. The surgeon did not take our insurance and I was in a scramble to find one who did and had rights at the children's hospital, otherwise I would be at one hospital recovering from a c-section (2 previous - so no choice there) and the baby would be at another recovering from the surgery. I spent about 6 hours that day on the sofa and on the phone and in the end did find a surgeon who could operate at the women and children's hospital.
Shortly after arriving home, I began having contractions. Real ones, painful ones. I was only 30 weeks pregnant. I went to the doctor who sent me to the hospital who monitored me and stopped the contractions. This was the beginning of a very repetative pattern over the next few weeks. All the doctors wanted me to get to 36 weeks, and they also began to lobby very hard for an amnio. They wanted to know what they were dealing with and how to best prepare. So a few weeks later I went in. I had never had one before and a dear friend went with me (husband traveling again) to hold my hand. Funny thing is God had prepped me for it and I didn't even know it. And boy, oh boy, are God's ways not our ways:
Before we left for Virginia, I went in for an endocrinology check up for my thyroid. I had a goiter and a hyperactive thyroid in my twenties, had a radiation treatment for it, and had been hypothyroid ever since. During my pregnancies the doctor monitors closely to make sure my levels were normal for the sake of the development of the baby. At this check up she felt another goiter and sent me for an ultrasound. It came back much larger than expected and she then wanted to biopsy it to make sure it wasn't thyroid cancer. If it was I would need surgery, but it could wait until after the baby was born she re-assured me (hah - didn't work). Two weeks before the amnio I went to the endo's office for the biopsy. A needle the length of a baseball bat lay on the table (ok - I exaggerate - but you get the picture). Pregnant lady, so nothing for calming of the nerves, just lay on the table please. Anyone tried to lay flat on their back and not move while you are 7 months pregnant? Somehow I made it through (mostly by counting the little black spots on the acoustic tile of the ceiling). When she was done she sad she couldn't get a good sample and wanted me to go to the hospital to have an ultrasound guided biopsy done. What? I have to do this again? A week later and there I was, on a different table, with a different doctor, just a topical , counting those same stupid spots. Let me tell you, a ginormous needle to the neck hurts - a lot. Flash forward to the amnio and it was a breeze!!!
Biopsy came back negative, amnio came back positive. God works in mysterious ways.

God and Tomas, part three

2010-10-14T21:30:00.001-05:00

Another month went by and it was time to go check if the double bubble was still there. The baby came into view on the screen and even I could see the two black spaces in the abdomen. So here we were, 6 months into it and it was a done deal. Surgery would be necessary. The doctor now switched gears and pushed for me to get an amnio to find out if the baby had DS. I didn't see the need as I didn't see how it would make a difference, and I didn't want to take any risks with an already compromised fetus. He went on to caution me about heart defects associated with DS and the Duodenal Atresia, and tell me that since the baby could not swallow amniotic fluid I would have too much, and be as large as someone carrying twins. He wanted Non-Stress tests every two weeks with increasing frequency as the pregnancy wore on. I saw a doctor (either him or the ob/gyn) every two weeks.
This was in October and as of yet we had not told any family about what was going on. . My bible study had ended in mid-September but the author of the books was holding a conference about an hour away from where we all lived. Most of the members of the group signed up to go and many of us were going to carpool. Also during this time my husband and I listed our house for sale so the job relocation could push forward. A quirky but fun Catholic tradition is to bury a statue of St. Joseph in your yard to help with a quick sale, and I was sorely tempted, but never got around to it. In the evenings after the kids were in bed I researched about the surgery, and also looked up the saints for expectant mothers. St. Joseph was one. I told my husband that maybe we were supposed to name this baby Joseph!
A few days before the conference a friend called to ask if I still felt up to it, and if I still wanted to go. I told her I did, that I felt a particular calling to be there. We drove over and got settled in the church. Well, as settled as a 6 month-extra-fluid carrying pregnant woman get get settled in a tiny church pew. The speaker got up and began a talk about the sanctity of the womb, and how every sperm and every egg were chosen specifically to bear fruit in the creation of that individual baby. That each conception was planned precisely by God, and that even though we may feel our pregnancies are a mistake, God knows better. Every one of my friends turned and smiled at me, and I was very grateful to God for clearly calling me to this place for this event. But it gets better.
Following the main speaker, a priest, who often helps her on her videos and at the live events, came out to talk. He walked on the stage and told all of us to take notice of the statue he was standing next to. It was St. Joseph! (As a side bar - at this point I was convinced the baby should be named Joseph - so if he was it is not on my head!). He talked about families and the men who protect them, then he went on to tell us about his younger brother. He was born 40 years ago with Down syndrome, and how his father would not leave him in an institution, and how his parents brought him home against the recommendations of the medical community and well meaning friends. When his brother was five years old he turned blue and stopped breathing. His mother drove to the hospital and his father did CPR in the backseat the whole way there. He died that day in the arms of his parents. The priest's sister was now expecting her fifth child and it was highly suspected that the baby had DS. His parents were overjoyed at the prospects of having another DS person in their lives, even though the loss of their son hung as heavy on their hearts as it did 35 years ago. Five years of wonderful, followed by a lifetime of heartache, and they would do it all again. Not only that, but they would have their daughter go through it; five short years and then devastation vs. never knowing the love of a DS child.
I was frozen. Really, how is it that God could care so much about me to send me these messages. How many other women in that room were pregnant? Maybe 4 others. How many with a now 1:2 chance of having a baby with DS? And how many NEEDED to hear that fathers love their children no matter what? Just one. Yet again God was leading me through the fog, guiding me to the peace that comes from resting and trusting in Him.

God and Tomas, part two

2010-10-13T14:11:00.000-05:00

One month later I went for a follow up ultrasound with the maternal fetal doctor. We knew if the echogenic foci was still there, our chances of a DS baby would stay the same 1:4. I can't remember why, but I did not have the girls with me that afternoon. Looking back it was definitely a God thing, as I almost always have the girls with me. But I laid on the table and was ready for whatever was coming. Or so I thought. The foci was still there, and I was ok with it. It would be what it was and this baby would be who he would be. But then the tech went and got the doctor and the doctor took a looooong time looking at something on the screen. He then stopped, sighed, and turned to me. I remember the sigh vividly, it made every muscle in my body tense and ache.
He told me that he was fairly sure the baby had duodenal atresia. Both such foreign words to me I had to make him write them down. Because of a "double bubble" marker on the ultrasound screen he was pretty certain that was the case. It meant the baby's stomach had not attached to his intestines and he would need life saving surgery within days after birth. At that moment the words "down" and "syndrome" flew out the window. They were so large 15 minutes beforehand, and then they were just gone. My baby was broken. He could not eat, therefore, he could not live. I did not at that time know anything about TPN (nutrition through an IV) and no one told me anything about it until months later. All I knew then was that if he didn't have surgery he would die. My love for him expanded exponentially and wrapped itself around his developing body. Only one thing pounded in my brain. I wanted this baby to live. I didn't care what he had or what he was or what he looked like, only that he live and I get to love him outside like I loved him while he was inside. The doctor went on to tell me that there was a small chance what he was seeing onscreen was just something to do with the bowel development, but that he would check again in a month. To his credit he never asked me "the question". I left, picked up the girls and went home.
My husband was away on business and I went back and forth so many times during the day about whether to tell him or not. Finally, I decided to wait until he got home and not worry him while he was at his meeting. That all fell to pieces the moment he called home that night and I heard his voice say "Hi, honey". I just started sobbing hysterically, poor guy, he had to ask me yes or no questions I was crying so hard I couldn't talk. He must have had a good few minutes of complete panic before he found out what was going on.
Him - "Is something wrong?"
Me - affirmative sobbing grunt
Him - "Is it one of the kids?"
Me - affirmative sobbing grunt
Him - "Olivia"
Me - negative sobbing grunt
Him - "Victoria?"
Me - negative sobbing grunt
At this point he paused a little bit and then said "The baby?" in a voice so filled with pain I knew he loved him already too.
I moaned my positive and then did my best to compose myself and get the news out. As much as he can drive me crazy, and he has some serious OCD issues let me tell you, at times like these that man is my rock. He talked me back to calm and stayed with me on the phone until I was ok for the night. And that was it. Our paradigm had shifted. Even a diagnosis of DS would still mean a healthy baby. But not anymore, with or without DS our baby would not be born healthy, and we were heartbroken.

God and Tomas, part one

2010-10-13T09:06:00.001-05:00

Since I had gestational diabetes with my first two pregnancies I knew the level of care would be high during this one as well. I made the rounds with my OB and endocrinologist and got an appointment for a maternal fetal during the 4th month of the pregnancy. When I last saw my OB it was for a gyn visit and I left with a script for a mammogram and literature on osteoporosis, here I was 8 months later and pregnant! A friend of mine had also just had a baby at 36 years old and said it was the weirdest thing going through it all again on the other side of 35. She said the doctors may have well taken a giant red stamp marked "geriatric" to her folder!
Another friend, who was 38, had also just found out she was pregnant about two months before I did. She was hosting a bible study I was attending. We were thrilled to have someone to go through it with, and the other women in the bible study were so supportive. My friend paved the way for me, and impressed several key points on me along the way. When it was time for her quad screen she only agreed with the understanding that the doctors were NOT to discuss terminating the pregnancy based on the results. Sure enough her levels came back high. I remember writing her an email to reassure her, and I told her that her family would not only survive but find a way to prosper no matter whom God was knitting together for them. This was all while I was in my first trimester and had no inkling of what was to come. Her son is a perfectly healthy two year old now, and the delight of their family.
My fourth month rolled around and it was time for the maternal fetal. I was so excitied because we could find out the sex of the baby. The day before the appointment Tropical Storm Fay blew into town. It started raining and never stopped for 78 hours. We had 52" of rain by the time it was over. Midway into the deluge I had to make a decision about whether to keep the appt. or not. The bridges to my island town were still open so I chanced it and went over to the mainland. I had to find out what I was having! My girls were with me and as the tech was getting started she asked them what they would prefer. They had talked about it beforehand of course and the running favorite was a boy, since they both already had a sister. Pretty logical right? Part way through the ultrasound the tech told us it looked like the girls were going to get their wish. Joy swept through me and I could not wait to tell my husband. Somewhere in that visit, the doctor came in and talked about echogenic foci on the heart and combined with the increase in my quad screen results meant a 1:4 chance of a baby with Down Syndrome.
We got into the car (soaking wet from the tropical storm raging outside, of course!) and called my husband and told him the great news. I did tell him about the increase in the risk of DS but we both still liked the odds and really didn't think more of it. Well, later I did.
I always fell in love with my babies from the pink line. I knicknamed them before we knew the sex, and I loved everything about being pregnant. So, 4 months into it, I was deeply connected to the little bibble (Victoria picked his nickname) growing in there. When I thought about having a baby with DS, I had a vague idea that it would be harder to raise a child with a diability, but mostly I worried about what my husband would be like, and how he would handle it. One night in bed I saw the Blessed Mother. It was between sleep and wakefulness and most definitely not a dream. It wasn't really what I would expect a vision to be like either so I don't know what it was. But she stood there and I stood there, both in a white emptiness all around us, she above me as if on a platform. We were facing each other and she bent down and placed a bundled, blanketed baby in my arms. This baby, my son. That was the beginning of me looking for the hand of God in the life of Tomas. If you read closely you can see Him working beforehand, but I was oblivious up until that point.

God and Tomas, prologue

2010-10-12T23:45:00.000-05:00

I wanted two children. My husband wanted two children. A match made in heaven for this and many other reasons. We would send them to Catholic school, and live according to our faith. That is a very brief synopsis of the first 13 years of my marriage.
We were married almost six years before my oldest was born. Three years later her sister was born. Two beautiful, healthy, perfect girls, and we were happy and finished. A two year kidney illness on my part and a 3 year horrific toddlerhood on the younger one's part and that decision was just further cemented. Preschool came and went for the oldest, and although it was at a Catholic school, it was not what I was looking for.
My husband and I decided to try homeschooling. Actually, I decided, and bullied him until he finally agreed to let me test Kindergarten - figuring I couldn't screw it up too bad and we could always just stick her back in if I did. I joined a Catholic homeschooling group and found a very happy place indeed. This was definitely our groove and where we were all supposed to be. I thanked God often for the richness of this life, and contentment reigned.
In hanging with the Catholic homeschooling community, I began to hear a lot about NFP (Natural Family Planning) and fertility charting. I just figured it wasn't for me and shoved it aside. I always knew the Catholic church disapproved of artificial birth control, but just went on my merry way anyhow, never reconciling the two, but not worried that I couldn't. Several years went by and then Catholic radio came to town.
For the first time, I began to understand WHY the church doesn't allow contraception. I read Humanae Vitae and knew that I had to change. I tortured my poor husband, who was perfectly happy with the way things were, thank you very much. Finally, he told me to bring home some literature so he could read it. I knew then we would change. He read some things, and listened to some programs, and we were set free to really test the waters of our faith.
We were still not planning on having any more kids, we just needed to stay not pregnant in a way that didn't offend our faith. Well, a few months into the charting and I was pregnant (I confess poor record keeping on my part - I did not learn enough in those early months and never took a class). Two weeks later and I miscarried. Neither of us was thrilled initially about the pregnancy, but I wrapped my heart around the little pink line pretty fast, while my husband was not there yet. But the miscarriage devastated me, and he shared my pain, for my sake.
A few months went by and I told him I wanted to have another child. He wasn't ready, and I waited. Sometimes patiently, sometimes not. Another year or so went by and he said he would be ready in August. I still laugh when I think about this, such an arbitrary thing, but it gave him a sense of control, and I was over the moon happy to have him on board - so August it would be.
I found out I was pregnant in May of that year.
I need to back up a bit, in April my husband got a job offer for a transfer to another division, which also meant a relocation. We went back and forth for a while, and spent the better part of the next few weeks making the decision. One weekend in May we went over all the financial aspects, made the pro/con lists, etc...In the end he decided to accept and signed the papers on a Monday morning. I tested positive on Tuesday.
And that is where the story really begins. Me, with 8 months left of my pregnancy; him, with 1 year left to relocate to his new job; and both of us inching our way deeper into the faith of our childhoods.

Catching up is hard to do!

2010-10-12T22:49:00.000-05:00

14 days of laundry from 5 people! 'Nuff said.
Will be back with more, but I am loving all the DS awareness posts.

We're heading out!

2010-09-29T22:25:00.000-05:00

Got the last call yesterday afternoon, everyone has cleared him. I am in a packing frenzy and trying to scramble for oxygen when we get to FL because the DME company messed up.
Wish me luck, and wish the germs to stay far away from bubble boy!

Monday, Monday

2010-09-27T21:08:00.000-05:00

Today was Tomas' BIG immunology appt. We waited 3 months for it. The doctor took a lot of time going over his history and ordered a tremendous amount of labwork. So I was satisfied as far as that goes.

But here's the thing that irked me. When she first came in she told me she had a lot of DS kids and that there were any number of immunology disorders that can go along with Downs. Ok, great - she has experience with DS kids. Then later during her exam she asked me if he was walking yet. No. How about crawling? No. Average age for DS kids to walk is 24 months. Tomas is 20 months old and has major medical issues along with the DS.

Next question - What does he say?
Say, what do you mean say?
What words does he say?

None - are you kidding me? - Ok, define a LOT of DS kids because you are acting like this is the first one you've examined.

That part unnerved me a bit, but as long as she has her specialty nailed I'm ok with it. Next up the lab work. He needs another 22 mls today, after 23 were drawn on Thursday. That makes 1 1/2 oz of blood in 5 days. I was just waiting for the doc to tell me he's anemic. Well, duh!

Afternoon brings the call form pedi to go over some of the labs. His liver enzymes are still elevated but 2 are slightly better then the other day, one is worse. Also his ANC has dropped again way down to 690.

My family is supposed to go on vacation in 3 days. We were waiting for the liver labs before I knew for sure whether Tomas and I could go. Those came back decent enough, but now pedi wants me to call hem/onc to get the ok from her since his ANC is down.

Also, now pedi doesn't think MRI is necessary, wants to go straight to the biopsy. I am waiting on GI to call to see what he says. Everything is in a very confused state right now.

The rest of the immunology panel should take 1-2 weeks to come back. I did find out that his immune system is much more compromised than I had thought. His IgM and IgG antibodies are low, which I knew, but his Igm are only at 50% of what they should be. IgM are the initial fighter cells in the body, IgG are disease specific. So between the low ANC and very low IgM it is no wonder he is sick all the time.

LFTs

2010-09-24T08:56:00.000-05:00

More medical terms are worming their way into my house. They are very good at this, they usually hitchhike though the back door with me on coming home from a doctor's appointment. Sometime, as was the case yesterday, they sneak in over the telephone wires.
The pediatrician called in the afternoon to go over the labs with me. Tomas' CBC was normal. His ANC was a stellar 2300. That makes two great CBCs in a row, which is wonderful. Next came a pause from the pedi, then, "We need to discuss his LFTs."
Well, ok, but what is an LFT? Liver function tests. CBC is normal, ANC is normal, LFTs are not. Someone please make this alphabet scramble STOP!
Up until yesterday the docs were only checking 2 of the 4 LFTs and they are the ones that had quadrupled on Wed. Yesterday, one of the two went slightly down, but is still roughly 5 times what it should be, and the second climbed even higher than before, now 8 times the normal level. This time they checked a third, one that measures bile duct damage, and it was much higher than it should be.
I asked if this could be residual damage from the gallbladder surgery, but he said we were too far out from the surgery and that the 3rd test in particular is one of those labs that should just NOT be elevated. That makes it crystal clear that something is wrong with his liver.
After consulting with hem/onc the docs now want an MRI before the biopsy. When Tomas was in NICU those docs attempted a liver biopsy but were unable to get the needle in due to the excessive amount of blood vessels around the liver. This time around they want to make sure there is even a possibility of getting the needle in, and an MRI might show some of the bile duct damage they are looking for. I thought the precaution was unnecessary, since it meant going under general twice - once for the MRI and again for the biopsy, and especially because Tomas had no trouble with the bone marrow biopsy (unless you count the atropene and bagging, but that would happen no matter what procedure they'd have done and is exactly why I want to avoid as much anesthesia as possible).
But the hematologist told me this is different from the bone marrow biopsy in that the risk for bleeding is significantly higher with an organ biopsy, and she wold feel much more comfortable with the MRI first. So be it. Next up, an MRI, followed closely by the biopsy.
Also, during the hem/onc aptt., she told me that she still feels like there is something going on with his immune system that is separate from the liver issue. She said, "As much as I hate to give him more than one diagnosis ..." Ugh...really? I am running out of brain cells people!
Because of all the anesthesia issues any procedure will need to be at the main children's hospital campus in Dallas, so just waiting on scheduling at this point.
As a lovely distraction, my brother in law is visiting this weekend from Utah. He hasn't seen Tomas yet, and the girls are so excited. We should have a wonderful time.

Letting the darkness out

2010-09-22T23:52:00.000-05:00

After yesterday's croup and bronchitis I was hoping to catch a break, but not so. This morning he broke out in a pinpoint rash all over his body. Every bit, started on his neck and then crept up and down until he was covered all over. By mid morning we were on our way to the pediatrician.
The doctor felt it was viral and probably the cause of the crud in his chest and airway. He agreed to leave him on the antibiotics the pulm ordered yesterday though, just in case, and to keep him from going bacterial while he fights off the virus. Since we were there he wanted to check Tomas' liver enzymes.
They were quadruple what they were just 2 weeks ago. He wanted to check with GI and then would get back to me. He sent me with a lab slip to have extra work done at tomorrow's hem/onc appt. I had activities with the girls for the rest of the day (Tomas and I hung out in the car) and we got home to find a message from the pedi that the GI doctor is concerned about the increase and wants the labs asap.
I skulked around the rest of the evening and let the heaviness of another thing gone wrong settle deep in. Now it is almost tomorrow and I am trying very hard to lift that weight and let the darkness out. One day someone will get my baby figured out. One day I will know what we are dealing with. One day I will have the upper hand and when such-and-such happens I will know that it is because of blah-blah-blah. Today is not that day though, and since God surely read my last post about giving it all over to him, and as I have no desire to be caught in a bold faced lie only 30 hours later, I have little choice.

Lord,
Take this trouble from my heart. Let me offer to You the trial of this day, and fill my heart with peace. Let the knowledge that You are there be enough for me. Let Your presence guide me along the path You have written for me, and let me serve You every step of the way.
Through Christ our Lord,
Amen.

You spin me round round baby, round round...

2010-09-21T18:56:00.000-05:00

I know,I just dated myself with the title of this post but I do feel like I am in a never ending circle these days.
Tomas has bronchitis again, the croup again, needs extra breathing treatments again, extra vest sessions again, and more antibiotics again. He was well for 3 days. This is his 4th go round in 3 months.
His pulminologist is afraid he is becoming resistant to his normal antibiotics so we are using 2 this time and staying on for a double course. Hopefully, that will knock out whatever he has growing in there.
He has a hem/onc appt this week and THE immunology appt. on Monday. I can't wait, as I am certain that his immune system (or lack thereof) is the reason he is sick so often. On Tuesday he goes back to pulm and on Wed. my family is leaving for FL. I know it sounds crazy right? Well, maybe the veil of germ protection that covered us for a week in San Antonio will also work in FL. One can hope.
I am struggling to keep up these days. With Tomas sick and Olivia having her asthma attack I got way behind. I am still trying to catch up but now he is sick again. I need a maid.
There was a time when I could do it all, everything that was required of me, but it is not so anymore. I now pick and choose household duties, activities, etc... based on what has been neglected the longest. I was once asked what the best thing about having a special needs child was. It is an easy answer, just one word. PERSPECTIVE.
So much has fallen away over these last 20 months. Some I gave up willingly, some were a painful departure. All of that lightening, of knowing what is really important and what isn't, is a gift from God brought through Tomas to me. I have often been told that Tomas is lucky that I am his mother and that God gave me Tomas because He knew I could handle it.
I don't think so. I most definitely know that Tomas is not lucky. I dare anyone to say they would do any less than what I do for him. He is my son and I do exactly what is expected of me, I deserve no extra credit from anyone for caring for him. I do not think I "handle it" any better than anyone else who has a challenging child placed before them. I do think though, that God knew I needed Tomas. That having Tomas would bring great change to my life and the lives of those closest to me.And that with that change comes the great decision. Do I try to stay in control or do I give it all over to God? I doubt very much whether I would have surrendered all if Tomas were not here.
My life was happy, content, and peaceful before he arrived. I did not NEED to give over anything to God. That is why I say I needed Tomas. The trials and sorrows that come from caring for a medically fragile child are a tremendous weight, one that I realized early on would crush me into nonrecognition if I tried to shoulder it myself. I knew for the health of my family I had to let it go. When I stopped worrying (do not misunderstand me. I still worry, I do not WORRY) a great freedom filled me. I am now free to love completely, free to live completely, free to laugh and find joy in the smallest of things.

2010-09-16T22:35:00.000-05:00

Tomas' SLP was out this morning and after two successful therapies previously he did terrible today. He has been eating maybe 5-7 bites of thick puree at each therapy and doing ok. He always has a delayed swallow and any time we try to push beyond those 7 bites he does poorly, but today after 5 bites he sounded wet, wet, wet. She now wants to wait until he is cognatively able to tell us what is going on. She even wrote 3 or 4 years old in her notes for today.

I don't know why this hit me so hard, I don't care if the tube is in for that long, or even longer, or even forever. I really don't, especialy if it is there to save his lungs. But what bothers me is that we make a little progress and then get flung backwards. If there was no hope then fine, I'd deal and all would be ok, but this whole, well maybe this time will be it, is just so much work!

And to top off the day Tomas had an endocrinology appt today and the doctor didn't even know he was in the hospital for the hypogylcemia! It was his partners who rounded on Tomas and that doc was the whole reason we had to go to a hospital 2 hours from home instead of our "home base" hosp much closer. So irritating, especially because he couldn't comment without reading through everything which he had no intention of doing right then and there. He was more concerned with giving me alternatives to the continuous feeds that could still keep the blood sugars stable than he was about getting to the root cause of the problem. Ughh, thank heavens this was our last appt. with him as our new insurance allows us to pick up an endo group back at our home hosp. I am pretty finished with endo as a whole though, today being the third endo to dissapoint me.

On a positive note, Olivia is doing much better. I can not wait until she outgrows her asthma, or at the very least the severity of her asthma, so an attack doesn't land her in bed for two days. Tomas still sounds a tiny bit rattly in that right lower lobe (yes, I have my own stethoscpoe - doesn't everyone?) so if that is still around by Mon. I'll bring him in. I'm hoping the vest will help to clear the rest out over the weekend.

It's been one of those days.

2010-09-13T20:21:00.000-05:00

I woke up at 6. More acurately I stopped trying to sleep at 6 and got out of bed to start the day. My husband made the coffee, God love him. I showered , got all my Tomas stuff together, and then got Tomas together. By a little after 7 we were on the road headed toward the imaging center for the liver ultrasound.
It takes about an hour to get there. About 45 minutes into it I get a call from the center saying that the tech can't make it today, but that they were going to call their backup tech and other imaging centers if need be; since I was driving so far and the docs wanted it asap. A few minutes later the receptionist called back and said the backup tech would be there in 45 minutes. I unload everything and head in, only to have her tell me that the backup tech can't make it. She starts calling all around and finally gets the children's hospital to take us in about an hour. Load everything back in and then drive to the hospital.
Tomas had the ultrasound and since the pediatrician has computer access to the children's hospital I called while driving home and left a message.
After I hung up my 10 year old called to ask if she can do a nebulizer treatment only 2 hours after doing her inhaler as she was wheezing and coughing. I tell her yes and then call the pulminologist as my daughter has now been wheezing/coughing for 12 hours and we can't get it under control with our usual stuff. I was just stepping down from the ultrasound stress and then get a call with my kid telling me she can't breath well! It was only 10 am!!!!
And I had only had 1 cup of coffee!
Later the pediatrician called me back to tell me that Tomas' liver looked really good. There were no signs of liver damage or of an enlarged liver. I was relieved but not relieved. It is such a hard feeling to discribe. Of course I don't want anything to be wrong with his liver but I also don't want to spend any more time NOT KNOWING what IS wrong! The doctor then went on to tell me all about the metabolic disorder he suspects as the root of our trouble. It is the same one the GI mentioned and one that I had found using google. It fits a lot of Tomas' symptoms but not all. It is the one the Fort Worth doctor said would be "inconsistent with Down syndrome." I am very happy that everyone is finally on the same page. Trouble is that the only way to definitively test for it is with a liver biopsy. So that's what is next. We will need to be at the Dallas campus of the children's hospital as it is the only one with an ICU. Since little man is airway trouble in a big way, it will be at least an overnight stay, and he'll need a platelet cogging time tested first. The pedi was going to consult with GI and the 2 of them are going to get it scheduled. I told the pedi I will save all my questions until we find out whether he really has it or not. They will be testing for Glycogen Storage Disease type 1b. You can read about it here: but I warn you it is heavy medical reading. I'll just wait until we know for sure before I worry too much.
Currently, Olivia is struggling. I have been on the phone with pulm twice today, and she has moved her to breathing treatments every hour for 5 hours to see if we can get it under control. So far we are 3 hours into it and it is a no go. The dr. also added on a 2nd antibiotic and oral steroids so hopefully by morning she will be showing improvement. Very soon I must spend some time and energy to figure out why she has so much trouble and we can't keep her asthma under control. She already takes a ton of preventative medication. Her lungs are so susceptable. I'm not sure I want to know.
I have come to the conclusion that although we love each other very much, my husband and I are a BAD genetic match!
One perfectly healthy child would've been nice!
As I was heading out this morning I saw the most beautiful sunrise I have seen in a long time, and certainly the prettiest one since we've been in TX. I just love moments like those. Big, glaring reminders of who's in charge and who created it all.

Signng Times

2010-09-10T07:06:00.000-05:00

I'm inserting some fun videos here to break up the medical gobbledy-gook:
Enjoy -

What will this day be like? I wonder....

2010-09-09T17:44:00.001-05:00

Just watched The Sound of Music with my Girls last night (and fussy Tomas but he was too whiny to count). I love, love, love that movie. Every scene, every song, every thing. The girls loved it too, and I'm glad because it would have caused a major rift if they didn't. The song stuck in my head as I did not go to sleep last night (whiny Tomas again) was "What will this day be like?"

Ha - God and that sense of humor!!! The day never started because yesterday never ended but I'm just going to insert an artificial page break at, oh, let's say around 6am. Whiny Tomas starts choking in his crib so up he comes and I settle him down but his nose and throat are full of snot. So I think I should go ahead and suction him. I hate doing it because he hates it so much and he usually ends up snottier than when we started because he's crying so much, but the crying usually helps to clear some stuff from his chest so I thought I would give it a shot.

Always trust your first instinct is the moral for today. I barely got that nasal tip in the edge of his nose and blood started gushing out. He was laying down and gagging on it. I sat him up and it just flooded out even more. Sputtering blood makes a huge mess. Poor Olivia was sleeping in my bed and it was at this point she woke up. The terror in her eyes was pitiful. I quickly explained that he was ok, it was just from his nose, but that we all needed to get dressed so we could take him in to the doctor.
It took about 20 mins for the bleeding to completely stop and I called the CBD (his hem/onc office) to make a lab appt. to get his platelets checked. While I was getting dressed the pediatrician called to check on him. He had called yesterday to get an update so he knew what was going on with the cold, so I filled him in on the bloody nose. He said if the labs came back normal and it wasn't a hematology issue to bring him in so he could examine him, and to call the ENT because he might want to put in a nasal trumpet (at least that is what I think he said - I can't wait to find out what it really is called) to keep his passages open and allow me to suction without the bleeding problems.
Well, the labs came back totally normal. Every single one of them. Really, that is a miracle that may get lost in what happens in the next few days so I really want to focus on it now. His labs were normal. His WBC was normal, platelets were normal, ANC was normal. Just wonderful, nothing going on there to make him bleed.
On to pediatrician! Drive through for lunch (yuck - none of us really likes fast food but sometimes it is unavoidable). Double ear infection and a raging sinus infection. Change up the antibiotics from the one the pulminologist put him on 2 days ago and if it doesn't improve by Saturday he needs to go in for IV antibiotics.
AND since we were there he wanted to go ahead and re-check Tomas liver enzymes from the last hospital stay. They are still elevated, high enough to cause him some concern. He felt the liver and said it was enlarged even over the last time he had examined him (I think that was in early August). He asked when the GI had scheduled the liver ultrasound and I said I hadn't heard back from him yet. He said he would give him a call to discuss things. Low and behold, as we were driving home from a quick stop at Target (meds, milk and a new Barbie Victoria finally saved up enough for - gotta love Target) the phone rang and it was the imaging center wanting to schedule the ultrasound asap.
The nurse went over a few things for me and said, as we were getting ready to hang up, "Ok, now don't forget this is a fasting study - he'll need to fast from midnight on."
Hold the phone sister - fast from midnight? - can't happen, he can't go more than 3 hours lately. She told me all about how they need the stomach to be empty and that the gallbladder needs to be not moving bile, blah, blah, blah. Ok, couple of things, 1. he is fed into his intestines so his stomach will be empty, 2. he does not have a gallbladder, and 3. he CAN NOT go without food for more than a few hours.
She was actually very nice and when I told her Tomas had no gallbladder she said happily, "Oh, GREAT!". I laughed because it was the first uspide to not having one. She is just going to check with the radiologist tomorrow to see how he wants to proceed, but the scan is set for Monday morning at 8am.
Also, while we were in Target the ENT nurse called back to get all the details and said she would run everything by the ENT tomorrow, but that he is only in for half a day in the morning so to be prepared to run Tomas down there in the morning if he wants to do anything. You know Maxine from the Hallmark cards? The wise-cracking old lady? Well, I can just picture something like a scene from one of those cards tomorrow morning. Bathrobe loosely tied on, curlers in hair, coffee cup in hand, and the phone rings and I have 15 minutes to be someplace that takes 40 minutes to get to on a good day. Just my take on it.
So that is what the day brought.
It also brought continued appreciation for how lovely and calm vacation was. and a wee bit of guilt about having Tomas out and about all week where he surely caught whatever bug he has. It is a balancing act for sure, bubble boy or living life. I have to try to find a happy medium or this is going to be a very, very, long winter.
And just in case you are wondering, I an not wondering what tomorrow will be like.

We interrupt vacation nirvana to bring you crashing back to reality

2010-09-07T21:17:00.000-05:00

Tomas is sick. He has a cold, I think. Should be no big deal, but it is. Huge deal. Gagging and choking, lots of blood in his stomach, and dropping O2 sats deal. I called all the major docs this morning and pulm bumped him up on treatments and vest therapy and started him on antibiotics. She said they are seeing the flu already this year, and she is in the process of getting him approved for his 3rd year of synagis shots (to keep RSV at bay - didn't work last year - although she swears it would have been much worse without the shots, but hey, let's give it a go!)

He also had a hypoglycemic episode yesterday morning, even though he was on a continuous feed. GI called this evening and said we needed to ultrasound his liver and move him to J feeds in the meantime. One possibility is that his stomach is not emptying for a few hours and then dumping everything at once causing a hyperinsulin response. I don't think that's the case but leaving him on J helps to eliminate it as a cause. Hypoglycemia on J feeds = definitely not dumping, definitely metabolic. I moved him to J feeds this morning anyway because he of the cold, but the whole - now the doctor said to move him to J and leave him there - makes me feel like we are moving backwards. He was only off the J for 3 months. He really wants to visualize the liver. Tomas had trouble with it in NICU and after his 2nd surgery the surgeon told me it was dark and enlarged. But that was over a year ago and nobody has taken a look since. It does not present large during exams but that could be from being on continuous feeds for so much of his life. If it comes back normal than we go to a HIDA scan (nuke test) But it requires 3 hours of motionless - in NICU they just swaddled him and he passed out, but now - who knows. After that comes the metabolic testing - which is just a blood draw so I wish they'd do that first, but they need to know what they are looking for.

Today we also had a tornado alarm and a thunderstorm (my girls are petrified - our FL house was struck by lightning and they've not been the same since) Normally, that is a throw in the towel sort of day, BUT it made me so thankful for how wonderful last week was. Everyone did so well and we had so few issues with Tomas. Really just the overheating and a few small feeding troubles, but mostly, just perfect.
Thank you, Lord, for the chance to enjoy each other and this world you created. It was most welcome and did not go unnoticed or unappreciated.

Tomorrow - cardiology check up...

Very long vacation re-cap

2010-09-06T16:58:00.000-05:00

Day 1 - Natural Bridge Caverns: Texas' largest cavern. 180 feet down and 180 feet UP! It was dark and wet and when the guide mentioned that it was found after a collapse Victoria had an anxiety attack and it was all I could do to keep her from losing it. She was convinced she would slip, fall into a column, knock it over, and cause another collapse. Olivia thought it was the coolest thing ever and wanted to go back the next day. Mike and I took turns carrying Tomas and pump bag. Mostly Mike as it was a steep climb down and up and I had my hands full with the middle child! It was very neat though, but so much more humid than any other cavern we've been to.

Day 2 - Mission of San Antonio: We had planned on seeing all 5 missions this day but after the first one we nearly had to quit. It was hot, heat index of 108 and the first mission we went to was very sprawled out and involved a lot of outdoor walking. The girls started feeling ill and Tomas was whining like crazy when I finally convinced my husband that we needed to seek out air conditioner. We made tracks for the welcome center and all 3 kids were overheated and Tomas got pretty darn sick. I can't exactly pump him full of cold water the way I can the girls. I gave him an ounce of cold water through his tube and just kept splashing down his body. He also takes a medication that prevents him form regulating his body temp well so it was just a bad idea all around. The park ranger brought over some ice and we eventually got him cooled down. We hung out there for over an hour and the ranger was awesome. She took the girls through their junior ranger park guide so they could earn their badges. Finally, we decided it safe to go. The ranger told us that one of the missions was completely air conditioned so we gave it a go. So glad we did - it was beautiful. The really cool thing about the missions is that 4 out of the 5 are still operating parishes. It would be so awesome to go to mass there!

Day 3 - San Antonio Zoo: We had fun, but it was another really hot day. Thankfully there were enough air conditioned building to duck into and hang out in before dashing to another exhibit. Tomas slept a large part of the day - I think we drained him!

Day 4 - The Alamo: ANOTHER hot day, no A/C and no flash photography allowed inside. So not many pics, and not much to tell. We tried to walk along the riverwalk but the kids were having none of it. It was just too hot. These two pics crack me up because I almost always smile, and my husband and I almost always hold hands or he has his arm around me. But you would NEVER know it from these pics!

Day 5 - Sea World: It was fun and a bit cooler that day. The highlight was feeding and touching the dolphins. I am such a Disney snob thought that it is hard to compare. We enjoyed the shows and enjoyed a few rides, but what can I say, nobody does theme park like Disney! That night back at the hotel they made s'mores, and had a huge projection screen out by the main pool for a flik and float! Mike kept Tomas up in the room and I stayed with the girls late into the night while they played water games and had a great time to finish off the trip.

Still to come....the trip home....

We do vacation up right!

2010-09-05T17:21:00.000-05:00

We had a fabulous time. I am glad I have been married to my husband for longer than I haven't because otherwise I might have killed him (seeing as I don't believe in divorce, murder is the only real alternative, but I have learned to live with and laugh at his neurosis). Typically, he can do about 72 hours of family togetherness without getting stressed, so that left us with 4 days of me walking the fine line between his whining and the kids whining. We once took a 9 day vacation and by day 8 I sat on the edge of the hotel bed and wept like a baby, so I now limit our vacation to 7 days max, and my world is a much happier place.

As usual, we start our vacation the night before we leave by relaxing and just hanging out together. We did that out back this year since the weather was perfect.

Being Silly

What's this Harry Potter all about anyway?

Next day we arrived at our hotel. My husband gets many many many reward points for all the travel he does so we stayed at an awesome hotel. It had it's own water park with a lazy river and 3 water slides as well as a large pool, a splash pool for little ones, and an adult only pool (which I realized I will probably be dead by the time I am able to use that one again!). It was fantastic and we could have spent the entire week just hanging out at the hotel. They had activities for the kids, an arcade, and a Starbucks for mommy.
The view from our balcony:

The girls in front of one of the slides:

The main pool:

Tomas loving the baby water slide:

But we ventured out anyway. More to follow...

We're back

2010-09-04T21:03:00.000-05:00

We had a fabulous time with just a few speed bumps along the way. Nothing we couldn't handle. I will follow with all the details later, but enjoy a few pics in the meantime.

I did it!

2010-08-28T12:45:00.000-05:00

I taught a whole month of school with no falling behind! When I planned for the school year, I knew we were going on vacation at the end of August so I backed into our start date by figuring a month of school before a week long break sounded reasonable. I really never thought we'd get it done. Last school year was so haphazard, and I just didn't want to repeat that randomness. Even with a hospital stay and too many appts. to count we got it all done. I am so happy, and relieved, that I can go away and not feel like I was already behind.
Tomas is doing very well. All 3 of my kids had pulmonary appts. this week and he is doing great from her standpoint. He still has some lung issues so he needs to stay on his meds (I was hoping to drop one of them but she said he still needed it), and a baseline retraction, but all in all he breathes like a champ these days. The other two kids are doing fine, just adjustments for their asthma/allergies.
His darn cold sores won't go away around his mouth. I probably should have done something before vacation but now it will have to wait until we get back. Hem/onc mentioned something about an anti-fungal.
I've not heard back from GI about the metabolic tests, but at this point I will wait until we get back.
We are off to San Antonio. I hope I remember to pack everything. I am thinking of leaving the suction machine home since it is summer and I hardly use it right now. I am so afraid that will be jinxing us though. We are also planning on being outside most of the week and Tomas doesn't do so well with the heat. I bought an umbrella that attaches to his stroller so maybe that will help.
Wishing you all a great week!

Pennies from heaven

2010-08-23T18:10:00.003-05:00

Great news!
I took Tomas to his GI this morning and we talked about everything that happened with the last hospital stay and the hypoglycemia. Without any prompting from me he said it sounds like we need to test for a metabolic disorder. He said that just because Tomas has Down syndrome doesn't mean he can't have anything else, and that rare doesn't mean nonexistent. He said Tomas has too many symptoms to ignore, and it needs to be checked out. He said that all the data gathered at the hospital, and from previous tests, does not fit neatly into a dumping syndrome diagnosis. He said that it would be more rare for Tomas to have something causing neutropenia, something else causing hypoglycemia, something else causing his platelet dysfunction, and that if a child has been given that many different diagnosis then it is usually because the doctor is wrong. He even said that a metabolic disorder could have caused Tomas' gallstone. He said he needed to do some research and check his books so that he ordered the right tests. He told me to absolutely forget about the medication that the doctors sent home from the hospital and to leave Tomas on continuous feeds until we find out for sure what is going on. He said that the blood in his stomach could be from a clotting disorder that comes from the platelet dysfunction which comes from - you guessed it - a metabolic disorder. What it boils down to is that it is just time to take a look and see what we can see. Have I mentioned I love this doctor. He is the one who called from vacation when Tomas was having the blood sugar lows before he was admitted to the hospital. He said way back then that he didn't think it was dumping syndrome.
I was on cloud nine leaving his office. I was actually giddy with joy that someone was listening. That someone else wanted reasonable, logical answers. I tell you it was a high I have not felt in a long time.
Now you must all pray for me because I want to do something very much of this world. I so want to prove the other doctor - the national hypoglycemic expert - wrong. He is the one who told me that something went wrong with the first fasting study - he didn't know what - but something. His partner is the one who told me that metabolic disorders were not consistent with DS, and that testing for them would be looking outside of the DS diagnosis. They are bad feelings and very strong in me right now, and I pray that I can pray them away.
For the first time since May (when that nonspecific, interesting, atypical rash showed up) I feel like we are on the road to finding out what is wrong.
Now for another God's ways are not our ways: I was forced into this GI practice when our old GI office dropped our insurance last September. I blogged then that I knew it was a God thing but was still irritated that I had to find 9 specialists to replace all the ones we lost. Here I am almost a year later and the veil is lifted and the cloud has cleared. Tomas was meant to be at this practice, at this moment, for this reason. When will I ever learn????????

Not much to report.

2010-08-20T21:08:00.000-05:00

Tomas is holding steady waiting on appts. and testing. He did see hem/onc this week and his ANC is a stellar (for him) 967. That is almost enough to meet the pediatrician's guidelines for taking him out in public. I stretch those guidelines a bit though, usually over 800 and we don't have any issues. He sees GI on Monday and I am so anxious to finally hash things out with someone whose willing to listen.
I was hoping it would be hematology but the "not his doctor" doctor was the one who saw him. This was after I confirmed that it would be his regular doctor when the office called with my reminder. The doctor who saw him is competent and kind, but the one I've been trying to see (she followed him in the hospital in June for the febrile neutropenia) is the only doctor we've come accross who seemed determined to get to the bottom of whatever is going on. The other doctor did say that it would make sense to test him for a metabolic disorder that does match a lot of symptoms Tomas is having, but that it would need to be done by Endocrinology. The problem with that is the current endo group feels that disorder is "inconsistent with Down syndrome". Hema said that may be true but it is not incompatable with DS. The new endo group can't see him until mid-October. So if GI won't test for it that leaves Tomas on hold until then. Not a terrible place to be, but answers would be nicer. Hell, at this point progress toward answers would be nice.
As I was checking out with hem/onc the receptionist asked if I had a preference for which doctor I saw. I told her I had been trying to see Dr. X for the last 3 visits but it doesn't seem to be happening. Later that day she called and explained that 3 families showed up at once for appts and rather than have me wait, the other doc saw us. She also said Dr. X apologized and a note was put in my file to only see her. I can guess what that note says all right!
The blood in his stomach is almost gone, just a tad here and there. I am back to feeding into the G after giving his stomach a break by using the J port for a few days. He has some recurrent cold sores coming out on his lip, they flair and fade and repeat, but hem/onc said with his ANC so strong they would not do anything about it right now.
I don't normally write about developmental milestones simply because with everything else going on they take such a back burner. He does what he does when he does it and we clap and cheer and move on. But, we have been working on something with his OT for a while now and he can finally do it - and for me it is a huge one. Ready?
He can put his pacifier in his mouth all by himself!!! As in, I'm taking a shower and he is in his crib and whining because the girls are still sleeping, Mike is already working, he is not amused with whatever toys I have tossed in there with him and now he can fish around until he finds a paci and he can put in his mouth and settle himself down. Massive accomplishment as far as I'm concerned.

These are his two favorite people on the planet. He even prefers them to me. Sob!.

He has also had some rather impressive cognitive leaps in the last 2 weeks or so. He can sign for ball, more, Olivia, and Victoria. He will put things into a container, point to pictures in a book, and make animal sounds when he holds his toy animals. Granted all the animals say "Baaa", but it is a start. And the tiger and lion are sort of a growly "baaa"!

This all happened so fast that it makes me wonder if the blood sugar swings were preventing him from concentrating before. Super highs, and then crashing lows, and now that they are stabilized with the continuous feeds he shows all this improvement. Hmmm.....

A normal week???

2010-08-15T09:15:00.000-05:00

For the second time since January we had no doctors appointments this past week. I wanted to type that on Thursday but was so very afraid I would jinx myself. No doctors appointments, a full week of school, mopped floors and all the rest. Today we even went to the mall.
Now for the fine print - Yesterday when I vented (checked for air bubbles) Tomas' stomach a large amount of blood and clots came out. He has had it before but not at the quantity he had yesterday. It was 4:30 which meant if I called anyone they were going to tell me to take him to ER. So I called my husband instead. And he had a good idea! Really. He said to switch him over to J feeds for the night and let his stomach heal. I did, and this morning when I checked, his stomach acid was a beautiful clear liquid. Yes, I used "stomach acid" and "beautiful" in the same sentence. After I checked it this morning I hooked him back up to stomach feeds to see whether yesterday's blood was a fluke, or if he really can't tolerate food in his belly anymore. Tonight I checked and it was bloody again but not as bad as yesterday - more like what I've seen on past occasions. He also had way too much food in there, as if his stomach isn't moving it through. So I am going to buy us the weekend with J feeds (thank God he still has the GJ and I can switch back and forth) and on Monday I'll call GI. That means 2 appts. next week.
Which begs the question - was this past week really normal? Or has that now become the exception? Whatever it was I'll take it! Please Sir, may I have some more?

The Wall

2010-08-09T17:12:00.000-05:00

We got home from the hospital on Wednesday afternoon. I trudged along through Wed. night, Thursday morning and Thursday night. But come Friday, I was done. I was worn out physically, and emotionally and just hit a wall about 3pm that afternoon. I had started our school year on Thursday (it was supposed to start on Monday but Tomas had other ideas) and wanted to try to catch up some on Friday. I didn't happen. We just did Friday's lessons and called it a day. After dinner the girls and I were cleaning up the kitchen and I just could not move anymore. It was about 7 by then. I told them as soon as I was done I was going to go to bed and they could stay up and watch cartoons until their dad got home at 9:30. They went upstairs to bathe and I started to wind down for the night. I am pretty sure there is an Erma Bombeck essay on this subject exactly.
I finished the dishes, started the dishwasher, and loaded the washing machine and set it for a 10 hour delay so I could put a load in the dryer first thing in the morning. Then I took Tomas to the bedroom, changed his diaper and his clothes, put his oxygen cannula on. his pulse ox probe on, checked his blood sugars and vented the air out of his belly (ok - I'm pretty sure Erma didn't do that stuff but you get the idea). After I put him in the crib I went back out to the kitchen and started to make his formula for the next day.
His formula is something else. Long ago I decided I wanted him off the canned stuff. I breastfed my girls and pretty much went straight to mashed table food. Very little jarred food was ever used. With Tomas, I pumped for 9 months and then stopped because I just couldn't find the time anymore. So we switched to over the counter formula. I have always hated it. It smells and tastes horrible. But it also kept my son alive so it most definitely has it's place. Anyway, when he turned one and it was time to move to a toddler formula I decided to give a blenderized diet a try. After tweaking and tuning and adding (all under the guidance of a nutritionist) we had a "recipe" that made me happy and was "real" food. Enter hypoglycemia. In order to try to stabilize his sugars we added fiber and more protein. That didn't seem to help, but the doctors at the hospital were quite glad he was on a blended diet instead of a canned formula as it allowed for the most modification. One doctor's instructions were to substitute all the short chain sugars for long chain sugars.
So there I was in the kitchen with all the ingredients out on the counter: organic 1% milk, organic low fat yogurt (he has to have the low fat milk products because of the missing gall bladder), vegetable puree I made, fruit puree I made, black bean puree I made (for fiber), baby food meat (the one thing I haven't figured out how to duplicate at home and get it smooth enough to fit through the pump), organic multigrain baby cereal, MCT oil, flax oil, and fish oil (added to replace the milk fats - these are easier to digest).
All of these sat out on my counter. Every night I mix up his batch for the next day, but that night I needed to study the sugars on a molecular level. Has the world gone completely mad???? In the end I decided to throw it at the feet of his nutritional team and run with the regular recipe through the weekend.
So back to me getting to bed early, I made the formula, started some rice for my husband to have with some leftover etoufee for when he got home, and re-cleaned the kitchen. By then the girls were done bathing so I tucked them into the guest bed (where the tv is) and blessed them good night. I then staggered my way into my bed. 9:20, 2 hours and 20 minutes after I started!

Going home

2010-08-04T11:36:00.000-05:00

We are busting out today. Yesterday's fasting study was a bust. For 18 hours Tomas never dropped below 55. The doctor is discounting the study from Saturday and does not think there is an underlying condition behind any fasting hypoglycemic episodes Tomas is having. Tomas does have glucose dumping syndrome which is a rapid increase of insulin whenever we bolus feed him, and he will need to be on a medication to prevent that. I am discontent though. I still think there is something else going on.
The doctor said we can always re-evaluate if things don't get better. Great - I don't want to come back, I want it fixed now, but it is not to be.
I also got the lovely news that there is definitely something going on with his liver, but that needs to be followed up with GI.
Maybe either the liver thing or the neutropenia thing can explain the hypoglycemia thing. I just need someone to figure out what all these things are. I am very frustrated since this means we have a long road ahead of us yet.
Am am thrilled to be going home though. I miss my kids, my husband and my bed. And at least I have a way to keep him safe until my yet-to-be-announced doctor in shining armor figures this all out.

The dark side of the moon

2010-08-02T17:44:00.000-05:00

After a consult with the hospital dietitian (shudder) yesterday morning, we "agreed" that Tomas would get 860 calories per 24 hours while in the hospital. He gets 800 at home but of course they wanted more. Ok fine, he can take 60 extra cals for a few days. However, the nurse arrived with the first bolus and it was 230cc. He gets 200 at home, he has never had that much ever. I tell her he is going to retch and gag, she says that is what the doctor ordered. Sure enough at 206 he starts gagging away. I stop the feed and let about 30 out.
4 hours later the nurse comes with the next bolus - 230ccs. Are you kidding me? The doctor knows, he even told the nurse I warned him it would happen, but he wants to try again anyway. Ok, but give him a break in the middle - she did, about half an hour and it worked.
Next up is the continuous feed, it should run from 10pm to 6am, just like at home, but it doesn't get turned off until 8 am when the day nurse comes in with a bolus of - you guessed it 230ccs. You can't do a bolus on top of a continuous that just finished and ran for 2 extra hours! Those are doctors orders. Ok fine. This time he started gagging after 100 ccs. That's it, I'm done and I'm mad and I want them to call the doctor because with every retch my son gets closer to a third nissen not to mention the aspiration risk.
While the nurse is gone the new Dr for today comes in and the first thing I tell him is that Tomas is being overfed. Lots and lots of other things get discussed (another post) but in the end he sends the nutritionist back who says that he IS being way overfed. About 250 cals over and that was not the program she recommended. She doesn't know why the Dr did what he did but new Dr is ok with whatever she says.
So this time around I say 800 for the day, that's it. Fine. Nurse comes in with his noon bolus and it is the correct amount (200cc), hooks him up and leaves. About 2/3 into the feed Tomas starts acting really fussy and uncomfortable - I check - and the nurse hooked the feed up to his J port. He was bolused into the J. I freak and the nurse and charge nurse come in and apologize like crazy. I make them call Tomas' GI (at another hospital) and find out what we need to do. He says he will be ok, but it will cause a more drastic dumping than feeding into the gastric port and to watch his sugars close.
About an hour after that, Tomas was sitting in his crib playing and just looked at me and started sobbing. I checked his sugars and sure enough they bottomed out. After both nurses come in and fix him I ask why we are we even still bolusing? Haven't we already established he has dumping syndrome? Can't we switch to continuous until we get the other issue figured out? They call the new Dr. and he says "Of course" Ughh, why didn't you do that in the first place???
We are waiting to get sent up to a different room on the endocrine floor. It was full when he was admitted. The fasting study won't start until tomorrow and I think we are here until at least Wednesday.

One more time

2010-08-02T12:29:00.000-05:00

He needs another fasting study.
Dr. Expert was in this morning and very knowledgeable on what might be going on but he wants to run another study to get a test that wasn't ordered the first go round. It wasn't an oversight, just the first doctor didn't think it was needed. Right now it looks like it may be a pituitary or liver disorder. Apparently not responding to the glucagon rescue is a large clue. The doctor said a few scary things (including leukemia - when does that word go away?) but the one that scared me the most is that if the next fasting study goes without incident than they are just going to assume the first was a fluke, that this is all related to the dumping syndrome, and we can go home and he will be fine. I know he is not fine, I have seen too much and held too much and ached too much to know he is fine. Which means we need to have another scary night so the doctors keep paying attention. That is such an inside-out way of thinking that I half wonder if I haven't gone wholly insane.
In the meantime here are some peek-a-boo pictures. How is it that the spirit of a 20 lb baby can be enough to carry all of us through this?

Update

2010-08-01T11:19:00.000-05:00

The doctor was just in, it is not diabetes, adrenal gland or major liver malfunction, not sure yet what it IS. Tomas is the most difficult patient on the endocrine floor and quite the mystery. Why am I not surprised? We will be here until "best case scenario - Tuesday". National expert on pediatric hypoglycemia is coming on tomorrow. Today they are testing for dumping syndrome because the Dr. thinks he has that AND whatever this other thing is that caused last nights drop.

A rather intense lesson on the Theory of Relativity

2010-08-01T07:58:00.002-05:00

Low blood sugars can cause convulsions, seizures, coma, and/or brain damage.

When Tomas hit 54 his nurse called the lab to come up and verify. When they drew blood and ran it his sugars were 38. That meant the fast was over, lab tests needed to be run, and then the nurse could give him his rescue meds.
This is where Einstein comes in. Time is relative, as manmade a contraption as the computer I am typing on. In reality there is only this moment, and this moment ebbs and flows and stretches and contracts all with the state of your emotional being.
And last night my emotional being made time stand still. I carried Tomas the rag doll and paced the room and waited. Every little bit he tried to cry but he did not have the energy, and I waited. The nurse was in the room with us, waiting, and watching. Then the charge nurse came in too, and we all waited. The lab tech came, drew blood, the nurse pushed the rescue med through the IV, and we all waited. For his eyes to open, for him to lift his head, for that smile. Nothing happened. 10 minutes of nothing and pacing and rocking my unresponsive son. His nurse checked his sugars - 43, now we had to wait another 10 minutes.
10 minutes, 10,000 years, time is relative.
Next sugar check - 42. It didn't work. The charge nurse and Tomas' nurse looked at each other and that made my stomach cramp hard. The charge nurse left to call the doctor who wanted to know if Tomas didn't make it to 60 at the 20 minute mark. Not even close.
2nd rescue med was given and we still waited. 5 more minutes until another sugar check. Eyes opened, head lifted, and mommy inhaleds deeply for the first time in half an hour! He perked up, looked around, and promptly fell asleep. That time a peaceful, blood sugar of 118, I'm just tired from what you put me through sleep.
He slept through the night well and I calmed down about 2 hours later and slept well also. His nurse said she has never had a patient not respond to the glucagon (first rescue med). I'm so not surprised. I pray, pray, pray this brings results. He performed beautifully, now we have to wait and see what the tests and doctors come back with.

2010-07-31T20:11:00.000-05:00

Tomas' endocrinologist started the fasting test at 2pm. His sugars are being tested every hour. So far: 94-83-71-64. When he hits 60 the lab is called up to verify and when he hits 50 tons of tests are done, rescue sugar is administered and then we are done, and just have to wait for the results. The doctor authorized fasting up to 15 hours if needed, but it looks like he may hit 50 soon. It will be nice to get this over with, he has been lethargic and sleepy for the last 2 hours. Update: While I was typing another draw - 54!! We're almost done!
He has an IV in his arm, and they started another one in his other arm but it didn't take so he now has a third in his ankle. One is for rescue meds and the other it for drawing labs. Unfortunately neither one is drawing back blood. Stuff can go in, but not out. So he is still being stuck for the lab draws, not to mention the glucose tests.

I read this a few days ago in one of my kid's school books as I was preparing for the new school year (set to start Monday!!). God is so good, I read it, liked it and tucked it away, not knowing I would need it just a few days later.
2 Corinthians 12: "My grace is sufficient for you, for power is made perfect in weakness." I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. Therefore, I am content with weaknesses, insults, hardships, persecutions, and constraints, for the sake of Christ; for when I am weak, then I am strong.

2010-07-31T00:16:00.000-05:00

Blood work and just getting settled tonight. Had to come in through the ER, took 6 hours - don't get me started. Fasting study and more tests tomorrow.
The bad - many many sticks for Tomas in the near future.
The good - we get our own nurse with the study. Since sugar drops are so dangerouse someone will be here all the time.
The hope - ANSWERS!

Do you think this IV is Tomas proof?

Admitted

2010-07-30T15:30:00.000-05:00

He's going in to Cook's Children 2 hours away. Pray for us for logistics. Will update when I can.

continued...

2010-07-30T12:44:00.000-05:00

12. Tomas had a very scary hypoglycemia episode yesterday evening and scared mommy good.
13. After I brought him back up and he recovered (still working on me!) I moved him to continuous feeds to buy us the evening.
14. Called pedi this morning, while I was on the phone I checked Tomas' sugars. 57 (too low) after only being off his continuous for 2 hours. Pedi said don't give him any breaks, keep the pump running until we figure out what is going on.
15. Pedi called back and wants to talk to GI - no longer thinks it is dumping but wants his opinion.
16. Pedi calls back, GI is on vacation, so now he wants to call current Endo.
17. Pedi calls back. He is waiting for call back from Endo, but GI called from vacation (love him!!!) and said it does not sound like dumping and the hypoglycemia is serious and get that baby checked out! (LOVE HIM!!!).
18. Pedi said the Endo group I am trying to get back into at Children's is not being very helpful (Dr. code for they are a bunch of jerks) and it would be better to stay with current endo. I like him but he is 1.5 hours away.
19. Pedi thinks he needs to get admitted to run tests and try different things. Both GI and pedi don't want any changes made at home - too risky. As if I want to repeat yesterday.
20. Just waiting on call back from current Endo, but it looks like he'll get admitted.
21. I used to think it was so weird to be in the postition of praying for doctors to find something wrong with my son, but now I realize there is something wrong, I am just praying for them to find it.
22. To be announced...

Blood sugars, toe sticks, and phones...Oh my!

2010-07-29T14:59:00.000-05:00

Mr. Man crashed again the other day down to 31 so I started checking a whole lot more often and I am finding some huge spikes 1 hour after his bolus meals. Tomas' toes look awful as I am checking sometimes 12 a day so we can find a pattern. Thank God he doesn't mind. really, not a flinch or an eyebrow twitch or anything. After a rather large spike yesterday I took him to the pedi who orderd 100 tests (ok - just 11) one of which involves frozen urine. I swear, I couldn't make this stuff up if I wanted. The pedi called the endo clinic at childrens and they thought it might be dumping syndrome. I didn't think so since not all the symptoms match and then the pedi called GI to run it by him. He didn't think so either. Actually here's the way it went down.
1. Trip to pedi.
2. pedi calls endo while I'm still there.
3. Endo too busy so I go home.
4. Pedi calls after talking to endo - sounds like dumping syndrome.
5. Pedi calls GI to discuss syndrome.
6. Pedi calls me back says GI doesn't agree, get labs done first thing in the morning.
7. Can't get labs done because I forgot SLT was coming this am, will go tomorrow.
8. Tomas drops his sugar again today and needs juice to get it back up.
9. I call pedi and leave message.
10. Pedi calls back says well maybe it is dumping syndrome, or this or this or that.
11. Pedi calls GI to discuss again , wait on labs until they talk.
12. To be announced...

Various forms of baby torture

2010-07-25T11:15:00.000-05:00

First, being forced to wear a pink hat by devilish sisters:

Second, the new improved version of CPT (chest physio therapy). It is like the old CPT (me tapping on his lungs) but on steroids! Luckily he seems to have found a way to enjoy it.

2010-07-22T22:23:00.000-05:00

I'm not sure exactly when this became a medical blog, but it did. I wish it wasn't, I really, really wish it wasn't.

Yesterday, I took Tomas in for his 18 month well baby and got him undressed for the exam and what was a few bumps of a tiny rash on his back had exploded into bumpy, pimply, marks all over his back. He also now has petechiae on his arms, back and chest. The Dr took one look and called the oncologist. That doc was unavailable but the pedi said that since Tomas' ANC was below 1000 last week he didn't feel comfortable vaccinating without a new CBC anyway.
So no shots. He also missed his 15 month well child because he was sick, so now he is officially behind on his vaccines, and the immunologist called the pedi after I left and said not to vaccinate until after she had seen him and tested him. That appt. isn't until the end of Sept. so no vaccines for a while.
When I left the peds office I took him to the lab and came home. I put him down for a nap, but after 3 hours he wasn't really stirring so I checked his blood sugars. Sure enough - they were low. It had only been 3 1/2 hours since his last feed. I've been mostly ignoring the low blood sugar because I thought it was only dropping after a long fast like 7-8 hours, but last night's were even lower than the afternoon, and today I let him go past 4 hours (with a timer so I would be sure to check and not forget) to see if he would recover or continue to slide down. At 4 hours after a feed he was at 60, 15 minutes later he was at 31. Needless to say I'm not doing that anymore. Thank heavens I had everything ready to go so I just hooked him up and pushed run. I checked again 10 minutes later and he was fine. Probably ignoring the blood sugar thing was a mistake on my part, ya think?
I just have to think there is a connection there somewhere. I just feel like the Drs are all missing something. Like there HAS to be this ONE THING that would explain everything. The rashes, the neutropenia, the fevers, the hypoglycemia - everything. I just can't believe that he could have that many different things wrong with him!
He had a follow up with hem/onc today but his Dr was on vacation, which I didn't find out until a different doctor walked into the room. I wasted 2 hours of driving time, an hour at the clinic and my $15 co-pay to have someone tell me he looked good and come back and see his regular doctor in a month. Good thing I'm not still peeved about it. Tomorrow I will have to call endo for the blood sugars and I have no idea how that is going to play out.

Ok - medical stuff is done, now for some mushy stuff. Some little man has figured out how to un-velcro his
diaper covers and this morning I found a half naked soaking wet baby in the crib. I stripped everything (including baby) and put it in the machine (not including baby), but nap time came around too soon. So I put him to sleep on my bed. No wires. No feeding tube (he had just been fed), no oxygen, and no monitor. I've never done it before. Then I decided something horrible was bound to happen if I left so I didn't. I crawled in and read while he napped. The girls were watching a movie. When he woke up we just snuggled, my face next to his. His hands on my nose and cheeks. So many things I took for granted with my first two babies. Just something so small like lying next to my sleeping son. I have moments of the other infancies that are frozen in my mind, where we were, what the baby was wearing, how she looked, and moved and smelled, and I just know that today was Tomas' moment. The one I'll remember long after his babyhood is over, the one that zooms me backwards in time to relive something wonderful over and over again.

All caught up!

2010-07-20T09:28:00.000-05:00

On Monday of last week I noticed Tomas' mick-key button (for the feeding tube) was loose on his stomach and not fitting right. I checked the balloon that holds it in place and it had only 1ml of water (should have 5).
By Tuesday morning I would have to fill it before each feed so the weight of the extension set would not bend the button to far. But after about 3 hours it was back down to 1ml.

So I called the doctor and the nurse called me back at 4pm (argh - you all know where this is going) and said to take him to the ER. I asked if I could just take it out at home and put a G in since I haven't used the J part in 6 weeks. She said no because if something went wrong I would have no help.
Ok fine, I go to the ER, and ask them to take the tube out and put in a G. But they won't without speaking to the doctor first. Fine, the ER doc calls the GI (who is NOT associated with the children's hosp) and guess what? He is OUT OF TOWN for the night. The doc covering for him does not know Tomas' history and so everyone (except me) agrees that they should just put in what they are taking out. Which means a GJ.
Of course the radiologist has gone home (it was about 7 by then) so he can't do it until the morning. Ok, whatever, we'll go home and come back in the morning. NOT SO says the doc. The tube has been "compromised" and is not safe to feed through and since he has fasting hypoglycemia they need to keep him and run him on IV fluids through the night.
If I take him home it would be AMA, which my husband still wanted me to do. But I was afraid if I did that CPS would be at my door in the morning.
But wait it gets better. So the doc makes me stay and insists he be admitted for the night but the hospital is FULL. So we get to spend the night in the ER exam room. It is quite nice as far as ER rooms go but there is a bed, not a crib, with side rails that have slats wide enough for me to slide through much less a 20lb baby, and it has a chair. Not a chair that turns into a bed or even a rocker/recliner, but just a chair. So we spent the night with Tomas in the bed with 100 (exaggeration) blankets and pillows bumped up against the rails to keep him on the bed and me with the chair pushed up against the bed and my arm through the slat resting on him to "feel" where he was.
Around 3am the staff brought me a more comfy rocker and I did fall asleep from around 5-8 in the morning. His procedure was done at 10 and we were out by noon.
At 2pm that day Tomas had his annual ECI evaluation I've never had one before and it is quite something when all the therapists show up at the same time. I was exhausted and sick but it went very well. He is 18 months old and "scored" 7 months for physical and 10 months for cognitive/emotional. The numbers are nice to have but really they don't mean much. He is making forward progress and I am content with the amount/duration of therapy he gets and don't intend to push things to help him catch up. That is just not my way. It did drive home my "forever baby" feeling though. His infancy is not the fleeting, snapshots in time, breathing in the scent of their skin kind that I had with my girls. His infancy is the languid, lazy, winding path, breathing in the scent of his skin kind.
That night at the hospital I started running a temp and ended up with a UTI and kidney infection. Fevers and nausea for 3 days while the antibiotics did their thing and by Friday morning I was feeling somewhat better.
But that is when Olivia decided to start wheezing. She had been coughing and had the same cold that brought Tomas bronchitis the week before. Just a sidebar here but what is it with summer colds this year? So, off to the pulmonologist with her and SHE has bronchitis and is wheezing and her lung function is down by 50%. Great. More antibiotics (remember the pharmacists know me?) and more nebulizer treatments and hopefully we can kick it in the butt before it turns into pneumonia. The doctor wants to get to the bottom of why her lungs are so susceptible, which will mean more testing sometime down the road. Maybe I can piggyback onto some of Tomas' tests, hah!
The weekend brought a new rash for Tomas. I did not take him to the doctor yesterday because he is not running a temp and he has a Hem/Onc follow up on Thursday anyway. It really can drive a person (mainly me)crazy, though.

And that's it. I am now all caught up!

4th of July under the umbrella because it was drizzling.

Catching up

2010-07-16T14:02:00.000-05:00

After the pulmonary visit on the 6th that Dr wanted to change his antibiotics. He had been on Augmentin since the 1st for the cellulitis around the G tube, but since he had yellow goop and was getting worse, clearly that was not covering for the respiratory infection. So she switched to Bactrim. She asked me to call Hem/Onc first because they had started him on the Augmentin and clear it with them. So I did. The nurse called me back and said it was fine with the docs to go ahead and switch. So I went to the pharmacy (they know me, hee hee) and got the new script filled.
THE NEXT DAY Tomas had a hematology follow up and not his regular doctor walks in and the first thing out of his mouth is "Why is he on Bactrim?" So I explain but as it turns out Bactrim can suppress bone marrow production and he doesn't need any trouble in that area. So he wants to switch back to Augmentin even though I said his respiratory symptoms were getting worse while he was on it. His ANC is holding steady at 1000 and as far as this other doc knows it is still the plan to have Tomas start IvIG sometime soon.
After I got to the car (holding a script for 10 more days of Augmentin) I started to get angry. His pulmonolgist has worked VERY hard at getting his lungs healthy and she had good reasons for switching. It wasn't working and the Bactrim covers better for the psuedemona bacteria he grows. I call her office and the receptionist puts her on. She asks me "But, did you tell him this and this and that?"
"Yes, I did. "
"Well, ok, fine, then no Bactrim. Switch back to the Augmentin but we'll add in Zithromax, but for 10 days not 5"
Off to the pharmacy with 2 more antibiotic scripts...did I mention they know me?

THE DAY AFTER THAT Tomas had an endocrinology follow up and the doctor talked about his thyroid (his dosage is fine) and also that the hypoglycemia episodes could be fasting or metabolic. He said he wasn't satisfied with the way that the other hospital ran the fasting test. They ran it for 8 hours, he said it needs to go longer, 12-24. He wanted to admit Tomas for 3 days and run it himself. I must have had a look of horror on my face because he stopped and sat down and asked me what I thought.
I said I really didn't want another hospital stay especially for something I'm pretty confident is fasting related. The few times we've had trouble feeding him his sugars drop. Why they didn't in the hospital test I can't explain. He said I was probably right and the "chances of him having a metabolic disorder were very small and really how many things can one baby have?"
I wanted to slap him, really. Doesn't he know that is the kiss of death???? Here's the really funny part. I immediately licked my thumb and made the sign of the cross on Tomas' forehead. It was like my dead Italian grandmother was channeling through me. I've never done it before and haven't thought about it in decades. I laughed out loud the whole way home.
Well, that brings everyone up to date for last week. This week brought more but also brought an illness for me so I am trying to rest some more and will catch up again in a few days. In the meantime I'll be catching up on blogs and such.

My Brain is FULL (but at least there is chocolate cake)

2010-07-06T18:14:00.001-05:00

Ok, remember a few posts back when I went on about how I like to know things? Well, it can stop now.
I have tiny bits and pieces of information bumper car-ing their way around in my head and the impacts are starting to hurt.

The hematologist called back last week and said they have given Tomas the working diagnosis of Autoimmune Cytopenia. His body is attacking (at various times and in various combos) all 3 cell lines, platelets, RBCs, and most especially, WBCs in the form of neutrophils. No one knows why he is doing it - that part still needs to be figured out. But here's what we know:
He has CD56 on his granulocytes and monocytes
He has decreased IgM antibodies.
He has slightly decreased B Lymphocytes.
He has a mother who had to look all that up before she knew what the heck anyone was talking about.

Before Hem/Onc begins IvIG therapy they wanted immunology to look him over and see if there was anything else to test for or look at. I just got a call from them that the 1st available is on Sept. 27th. Pretty funny. Tomas sees hem/onc tomorrow so I guess they will go ahead and start without waiting on Immunology.

Tomas still has the cellulitis around his G tube, and after a cough filled weekend with a trip to pulmonology this morning he also has bronchitis. Just for fun (not really) I took him to GI this afternoon to go over his feeding plan, find a formula to use when he is in the hospital, and have the Dr check his stoma.

While we were there the Dr asked me some questions and it turns out that night sweats and episodes of tachy/brady cardia are NOT normal! Who knew? Ok, I knew but I didn't want to admit it. It is a neuro-motor issue connected to the GI system and I should bring it up with Tomas' neurologist. Only prob? He doesn't have one. Thankfully, the GI doc said it wasn't a HUGE deal and did not need to be addressed right now. Great - back burner for that one.

Final stop for the day was the pharmacy. With new antibiotics and a new pulmonary drug that needs to be drawn out through a needle and added to his current regimen of neb treatments, which have been greatly increased due to the aforementioned bronchitis. And this might be a good time to throw in that his nursing hours ran out last month and I am waiting for the medicaid waiver to become effective before we get our nurse back.

Now everyone knows how funny I think my husband is (it is his saving grace), but I am beginning to think that God shares his trait. Just this weekend we were talking about (what else?) Tomas and he said in an exasperated voice:
"What are we going to do about him?"
Me (I think this was brilliant on my part) "Love him."
"Well, I do, but God keeps trying to kill him."
Me (finding the humor in that) "Ok then, just do what I do and pray to find joy in everyday and all the little things."
He considered it for a moment but then went back to his pessimistic ways. BUT God was listening - stupid omniscient, omnipresent ears!

So my theory is that God is hiding joy in all the medical terms and jargon and doctor visits and therapy sessions and medications, and that I have now been challenged to find the joy in the mundane, and sometimes downright difficult. But that is ok, because I am winning.

Turns out joy was hiding in the chocolate cake I made on Sunday afternoon. I found it yesterday when I picked my girls up from camp and they came home and had a big slice of cake and a big glass of milk and talked non-stop about their day and their new friends.

Today it was an easy one. Joy was shining from a woman with (I think) CP. She and I shared an elevator ride up to the clinic and the spirit in her recognized the spirit in Tomas and the two of them electrified the entire cart load of people.

And always, always, there is joy in that smile. The one that draws people from across the room. The one that is more contagious than any disease in the world. That smile is the reason I know I can't lose, and I am the better person for having seen it.

Heads or Tails

2010-07-01T19:04:00.000-05:00

After 5 hours at the hem/onc clinic I'm not sure I can make much out of what I learned, but here goes.

1.He does not have leukemia. Not now and not in the near future. His chromosome analysis came back clean. I asked if this meant he was in the clear, it doesn't. Just not coming our way any time soon. It does not reduce his 30% risk. Bummer. Especially because we already knew he didn't have leukemia so hearing it today was like, "Ok, what else ya got?"
2. Although his labs on Tues. looked great, they did not today. His ANC is back down and on its way down further. He is neutropenic again.
3. His biopsy did show "CD56 expression on the granulocytes and monocytes". That can be associated with leukemia but since we know he doesn't have that (from the chromosome study) it can also be associated with autoimmune disease.
4. He has cellulitis around his GJ tube, which is now being treated with antibiotics. That MAY explain the fever from Tues., but not anything before that. Although, the Dr. pointed out he really OUGHT to be running a temp today due to the infection but isn't. This leads her to believe the infection isn't bad enough to warrant a fever and then that does not explain Tues.' temp.
5. His ANA (anti-neutrophil antibody test) is not back yet.
6. A biopsy of some duodenal ulcers that he had done last year showed pooling of neutrophils around one of the ulcers.
7. His petechiae are unusual because his platelets are high enough that he should not have them. It could be a platelet disorder completely unrelated to everything else.
8. The doctor said he was "interesting"

What that all means is that it is looking more than ever like it is a autoimmune disorder. The hem/onc called immunology to go over the labs and some history of Tomas' that I brought with me today. She felt like it was an important piece of the puzzle. It was all the bacteria he has grown in the past (which she said people don't typically grow) and that he was clinically diagnosed as septic at birth. Somehow all that bacteria points to something but I don't know what. She's not sure. but mentioned a few things, most of which I can't remember. The one I can is called HLL and she said it is not cancer but is treated like cancer because unless they get it in check it can destroy the healthy cells. Of course that's the one I remember. She would like to start treating him with IVIG infusions. She wants to run everything by immunology and then will call me tonight.
So I can't really make heads or tails of whether we have an answer or not.
P.S. - the bit of info I got yesterday was that he had CD56 show up on the biopsy but the pedi wasn't sure what it meant.

On a whim

2010-06-30T18:38:00.000-05:00

I used to jump in the car with the girls and head wherever my heart took us for the day. Sometimes even overnight since Mike travelled so much. That was pretty much quashed with the addition of someone special to our lives. Except for today.
I took him to pedi this morning and he had a bit of news but wasn't really able to decipher it for me. I have a feeling tomorrow's visit will be a long one, but we shall see. As we were driving home, I had this HUGE tug to go out into the world today. So we ran home packed up enough formula for Tomas and were off. I took them to a local amusement park I've been wanting to take them to forever. Since the weather was pretty decent today (low 90's instead of low 100's, hah!) and the small one was NOT nuetropenic yesterday, I gave in to the tug.
I promise I will post tomorrow but for now just enjoy the pictures:

ER today, Pedi tommorrow, Hem/Onc on Thursday...answers anyone?

2010-06-29T23:04:00.000-05:00

I had to take the little man to ER this morning because he spiked a temp overnight, but his ANC is quite good so he got to come home. Honestly though, this whole "we don't know what's wrong with him" is draining me more than anything else we've dealt with so far. I really hope something turns up soon. If my husband tells me "That's why they call it PRACTICING medicine" one more time I may have to kill him, and then what would that do to my immortal soul? I would NEVER get all my questions answered!
Oh, and Stephanie - I told you so!

Still home (yah!)

2010-06-27T14:56:00.000-05:00

Tomas is hanging in there. He has been running 99.7-100 every day, but that is still low enough to keep him home. One of his lower incisions blistered and pussed up. This is 2 months after the surgery and the second incision to get a small infection. That all just makes me think that whatever is going on with his blood is not over, but darned if the doctors can find it. He has a few other minor things going on but not enough to make me want to go to the Drs office again. He has a follow up hem/onc appt. on Thursday and a few important test results should be in by then. I have been trying to dig out the laundry room as 10 days of no one doing the wash can get pretty impressive.
I've been spending time with the girls and leaving Tomas at home as much as Mike is able to watch him. Yesterday I did take him to Bath and Body works with us and sure enough a sweet woman came over and oohed and ahhed and then touched his head (ok) and then his hand (not ok). It is so hard, I can't figure out how to stop the movement without doing a quick yell to get the person's attention. Since I am ok with people talking to him or even touching his head it gets really weird to try to interrupt if they start to cross a line they have no idea even exists. I have a sign on his stroller that says "Stop, please wash your hands before touching mine.", but some people are just oblivious. The alternative is to tell them to please not touch at all and then I have to go into an explanation of why. And just for kicks Victoria woke up sniffling, sneezing and coughing this morning. Really, unless we put him in a bubble it is just not a game we can win.
Please pray for my father in law, he is having quadruple bypass surgery on Tuesday. They only found out last week that he even had a blockage so this has come at them VERY fast and my MIL is a wreck.

2010-06-24T08:12:00.000-05:00

We are home. If he runs a temp of 100.4 I have to take him to ER. If his ANC is over 500 he can just get IV antibiotics, any lower than 500 and he gets admitted until he is fever free and ANC climbs. We are waiting for the chromosomal study on the biopsy which can show pre-leukemia activity and the anit-neutrophil antibody test results to come in. He has an appt. with hem/onc next Thursday and everything should be in by then.

2010-06-23T11:00:00.000-05:00

The day we almost went home

2010-06-22T17:04:00.001-05:00

Well, since his labs looked decent this morning (ANC of 700, Hgb of 11.4 and platelets of 381 - What? Are you sure that's my kid?) he was going to go home today. The doctor came in, said we could go, and was about to go over the maintenance plan while she was doing her exam. She said he felt warm. He was running pretty warm but his temps had all come up normal. She wasn't happy so she ordered a rectal temp and while we were waiting she watched his sats. He is tachycardic and his respiratory rate is slightly up. His nurse came in and said he looked paler than he did even an hour ago. Everyone has taken his temp nine ways to Sunday and it is still coming up just over 99, BUT he feels really warm. Plus his heart rate and RR are still up, so here we remain. At this point I don't even want to go home. I want answers. There I said it. Even if it means being stuck here. What I don't want is to go home and then have to come back again like last time. He is also making a squeak sometimes when he inhales so she is going to see if ENT will look at him tomorrow, maybe the laryngomalacia is flairing up and has something to do with all this - who knows! Every single viral and bacterial test so far has come back negative. The only puzzle pieces we have are a slightly cloudy chest x-ray and low levels of IgM antibodies. It is not enough to get even a cloudy picture going. No one was really thinking that leukemia was the case anyway since he had started making platelets again, and while it is certainly nice to have that concrete answer we are no further along than before. And BTW he needed to be resucitated with the bag and an Atropine injection to boost his dropping heart rate after coming out of anesthesia yesterday.
I am very frustrated but please don't mistake that for ungrateful. Maybe tomorrow we will go home, and maybe we won't, and that's ok, because I want to take him home when it is safe to take him home.
ps - I have cute pictures and videos but my husband sent the wrong USB cord from home, so it will have to wait.

No leukemia for Tomas!!!

2010-06-21T17:47:00.002-05:00

We don't have any other answers yet, but that is the best birthday present ever! And he may go home tomorrow!

Holding Steady

2010-06-19T23:16:00.000-05:00

I had a lovely day today with my girls. Mike brought them early and stayed at the hospital for the day while the 3 women of the house went to a tea party thrown by the Martha Stewart of N. Texas. Amazing lady, amazing hostess, and amazing party. 16 girls were giggling and screaming and mommies were giggling just from watching them. Filled my heart up with a warmth that will last many days.
Sadly, after the fun it was time for some errands but at least we were together and out of the hospital. Did some grocery shopping where the girls almost fell over from the stuff I said was ok. Like donuts, and Pop Tarts, and Little Debbie Cosmic Brownies. I never buy that stuff. Well, we do get Pop Tarts whenever we're on vacation but that is pretty much it. But this time I needed something my husband could prepare (i.e. - open) or that the girls could get for themselves. So breakfast, lunch, and dinner (at least he can grill the dinner meat) are taken care of for the week. The 3 of us drive home ready to put the groceries away and spend some time in the pool before we have to head back to the hospital. As I am pulling up in the driveway I realize I left my house key in the hospital room!!!!!! So I put all the frozen and refrigerator stuff in a cooler from the garage and left it there while we drove back so my husband could then just take the girls home for the night and rescue the groceries. Oh well, at least it was an adventure. We will try again tomorrow as the girls are taking me out to see Toy Story 3 for my birthday (they came up with that all by themselves - go figure!). My husband will spend Father's Day being the awesome father that he is.
Tomas is just hanging out, schmoozing with the nurses and RT people. His ANC was up a little today, but his WBC and RBC and Hgb were down a little today. All in all he is just rolling along. His Dr. said she likes to see the monocyte count between 20-30% and then knows a rebound is coming. His have been dancing between 3-6% so we still have a good couple of days of this at least. The care coordinator came in today to discuss Monday's transport, which brings me to my next point.
I have stayed, with Tomas and for other surgeries of my own, in 10 different hospitals. This one blows them all out of the water. It is like a hotel. I think the campus is only 5 years old, but it is more than that. Someone spent a lot of time thinking about what families need while they are here. The layout and design are just right and the ENTIRE staff is friendly if not downright super nice. They only began admitting oncology patients 3 months ago and there are only 6 kids on the floor now. Only 2 babies and both are in rooms right outside the nurses station. It makes such a huge difference in how well I cope, and I am so grateful he can stay here.
Funny story that highlights how much I need a vacation (or at the very least a blue martini!). Last week my friend said she had just finished her CAT testing and was so relieved. I said, "Oh my God, what's wrong?"
She looked at me a little confused and them smiled and said, "No, C. A. T. test - California Achievement Test". It is a standardized test homeschool moms can use to gage their child's school year. I tell you I may need help by the time this is all over!