Saturday, June 24, 2006 - L.O.A.
For all of you who remember from my previous e-mail ... way back ... LOA means Leave of Absence (really ... does that make any sense?? but I didn't name it that). James is home for the weekend. Technically he has to return Sunday night, but we can call in and ask for it extended until Monday morning. You are only allowed to be gone 48 hours or you should be discharged. But there are ways around that ... so hopefully we get a few nights in our own bed ... well rested for next week.
I'll try not to get into great detail about all that is going on ... even I get confused and I'm right involved. Day 1 was spent doing pretty much doing nothing but running after James while he played, rode the cars, ran behind his walker ...taking him for wagon rides ... talk about a long day. On the doctors side, this day was spent admitting him and getting the ball rolling. The wanted all departments involved right away. The departments we are dealing with are GI (Gastrointestinal/Stomach), Hematology (Blood), and Metabolics (Genetics). Day 2 was slow also, but we did get a Hematology consultation in, which got the ball rolling for some further tests. After some discussion it was decided to go ahead with the bone marrow biopsy. At first they felt this was not necessary since it would not tell us anything more: it would rule out any cancers, and he is "too healthy" to have cancer. This got me a bit worked up since this past month we have been sitting at home waiting for this consultation which, we were told, would give us the answers. After consulting with the team the doctor came back to say she had changed her mind, due to a few factors they felt it would be best to go ahead and at least rule this out, as well there was one other non-cancerous disease that can be found thru this biopsy and he has the symptoms of this. So this biopsy is booked for Tuesday.
Today was a bit busier, which was a nice change ... at least the day went faster for me ... altho I'm not so sure James enjoyed this day as much. He was awakened by the Metabolics doctor to have a quick review before he was taken down for an ultrasound and x-rays. He did good through these, I'm so thankful for such an easy child in this respect. Metabolics is looking for genetic disases (not necessarily that Rob or I have it, but that our combined genes create it), or storage diseases - meaning his body is not processing his food properly one way or another. More blood work and as well as a skin biopsy. These are both very specific tests that take long to get results. He had the skin biopsy done this afternoon ... this was literally done by cutting a piece of skin out with a pair of scissors ... no freezing, just clean the spot, hold the arm down and snip. Poor guy ... but, put the bandage on, cuddle and a minute later all is forgotten ... such a little man. As well he visited the eye clinic today to confirm that his vision is fine. They had to put drops in to dilate his pupils and he did seem to be a bit bothered by this, but he still insisted on playing outside ... squinting and rubbing his eyes ... but outside none-the-less.
As for this coming week ... they are still getting together on this. Since Hematology does not feel that a bone marrow is going to give answers, I quickly pushed that I wanted all things done, now! and not to wait for those results in order to start all over again. Thankfully the doctors were in agreement with this and so we are still waiting to see what is decided. My GI doctor felt the bone marrow would be the answer and a liver biopsy was not necessary. But today I spoke with the doctor filling in and he felt that we should probably do a liver biopsy as well as possibily a muscle biopsy. This all needs to be figured out on Monday as all the biopsies are suppose to be done together on Tuesday. As much as it sounds awful to do all these, and I hate to put the poor guy through it all, I'd rather have it all done at once then to have to continously put him through this. We were told that the bone marrow can be painful ... they will be taking out of both hips ... but that children usually bounce back quickly and it's possible it may not even effect him. I have not discussed the other two biopsies and their effects yet as it has not yet been determined if they will be done ... altho it's sounding more and more likely.
We are thankful to see that things are finally moving forward. I don't even want to begin to imagine how long it would take as an outpatient when so many of these tests take so long to get results and each doctor keeps telling us what a puzzle he is. We have also been warned that we may not get an answer. This is not comforting. They try to tell us that at least each tests rules out things ... but I rather have a diagnosis then to be told that there just isn't an answer. We have struggled to just maintain his weight and he has shown in the past month that his body cannot keep going this way. We continue to pray the Lord will guide the minds and hands of the doctors and bless us with an answer. We also pray for patience and strength to accept all that comes before us. We know that our strength and comfort lies in Him, He will carry us through.
I'll try not to get into great detail about all that is going on ... even I get confused and I'm right involved. Day 1 was spent doing pretty much doing nothing but running after James while he played, rode the cars, ran behind his walker ...taking him for wagon rides ... talk about a long day. On the doctors side, this day was spent admitting him and getting the ball rolling. The wanted all departments involved right away. The departments we are dealing with are GI (Gastrointestinal/Stomach), Hematology (Blood), and Metabolics (Genetics). Day 2 was slow also, but we did get a Hematology consultation in, which got the ball rolling for some further tests. After some discussion it was decided to go ahead with the bone marrow biopsy. At first they felt this was not necessary since it would not tell us anything more: it would rule out any cancers, and he is "too healthy" to have cancer. This got me a bit worked up since this past month we have been sitting at home waiting for this consultation which, we were told, would give us the answers. After consulting with the team the doctor came back to say she had changed her mind, due to a few factors they felt it would be best to go ahead and at least rule this out, as well there was one other non-cancerous disease that can be found thru this biopsy and he has the symptoms of this. So this biopsy is booked for Tuesday.
Today was a bit busier, which was a nice change ... at least the day went faster for me ... altho I'm not so sure James enjoyed this day as much. He was awakened by the Metabolics doctor to have a quick review before he was taken down for an ultrasound and x-rays. He did good through these, I'm so thankful for such an easy child in this respect. Metabolics is looking for genetic disases (not necessarily that Rob or I have it, but that our combined genes create it), or storage diseases - meaning his body is not processing his food properly one way or another. More blood work and as well as a skin biopsy. These are both very specific tests that take long to get results. He had the skin biopsy done this afternoon ... this was literally done by cutting a piece of skin out with a pair of scissors ... no freezing, just clean the spot, hold the arm down and snip. Poor guy ... but, put the bandage on, cuddle and a minute later all is forgotten ... such a little man. As well he visited the eye clinic today to confirm that his vision is fine. They had to put drops in to dilate his pupils and he did seem to be a bit bothered by this, but he still insisted on playing outside ... squinting and rubbing his eyes ... but outside none-the-less.
As for this coming week ... they are still getting together on this. Since Hematology does not feel that a bone marrow is going to give answers, I quickly pushed that I wanted all things done, now! and not to wait for those results in order to start all over again. Thankfully the doctors were in agreement with this and so we are still waiting to see what is decided. My GI doctor felt the bone marrow would be the answer and a liver biopsy was not necessary. But today I spoke with the doctor filling in and he felt that we should probably do a liver biopsy as well as possibily a muscle biopsy. This all needs to be figured out on Monday as all the biopsies are suppose to be done together on Tuesday. As much as it sounds awful to do all these, and I hate to put the poor guy through it all, I'd rather have it all done at once then to have to continously put him through this. We were told that the bone marrow can be painful ... they will be taking out of both hips ... but that children usually bounce back quickly and it's possible it may not even effect him. I have not discussed the other two biopsies and their effects yet as it has not yet been determined if they will be done ... altho it's sounding more and more likely.
We are thankful to see that things are finally moving forward. I don't even want to begin to imagine how long it would take as an outpatient when so many of these tests take so long to get results and each doctor keeps telling us what a puzzle he is. We have also been warned that we may not get an answer. This is not comforting. They try to tell us that at least each tests rules out things ... but I rather have a diagnosis then to be told that there just isn't an answer. We have struggled to just maintain his weight and he has shown in the past month that his body cannot keep going this way. We continue to pray the Lord will guide the minds and hands of the doctors and bless us with an answer. We also pray for patience and strength to accept all that comes before us. We know that our strength and comfort lies in Him, He will carry us through.
Here James is having his EEG done. They put the probes on his head and then wrapped it up so he wouldn't touch them. After that we gave him his bottle to try convince him to go to sleep as this is how they get the best reading. He did not sleep, although he did lay quiet for a while, eventually I ended up holding him while they finished up the test
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