Wednesday, September 29, 2010

We're heading out!

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, September 27, 2010

Monday, Monday

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.

Friday, September 24, 2010

LFTs

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.

Wednesday, September 22, 2010

Letting the darkness out

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.

Tuesday, September 21, 2010

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

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.

Thursday, September 16, 2010

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.

Monday, September 13, 2010

It's been one of those days.

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.

Friday, September 10, 2010

Signng Times

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

video

Thursday, September 9, 2010

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

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.

Tuesday, September 7, 2010

We interrupt vacation nirvana to bring you crashing back to reality

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...

Monday, September 6, 2010

Very long vacation re-cap

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....

Sunday, September 5, 2010

We do vacation up right!

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...

Saturday, September 4, 2010

We're back

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.