Saturday, August 28, 2010

I did it!

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!

Monday, August 23, 2010

Pennies from heaven

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????????

Friday, August 20, 2010

Not much to report.

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.....

Sunday, August 15, 2010

A normal week???

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?

Monday, August 9, 2010

The Wall

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!

Wednesday, August 4, 2010

Going home

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.

Monday, August 2, 2010

The dark side of the moon

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

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?

Sunday, August 1, 2010


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

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.