Wednesday, July 12, 2006 - Stable But Not

I see that Rob took the honours of writing a quick note. Sometimes I feel I'm always behind here and so I just didn't bother writing right away as I hoped it would all clear up quickly and easily. I suppose eventually we'll just have to stop writing every time James ends up in the hospital as this will likely be a familiar part of our lives for the next couple years. It certainly has been an up and down time the past couple months ... and here we were so excited last week when we finally got a diagnosis. How quickly things turned around again ... but regardless we're glad we have the diagnosis ...so that it can make things less complicated, altho in truth, it doesn't really seem like that's the case.

In doctors terms James is considered stable. To look at him you would not think so, even the nurses get quite concerned at times. James continues to struggle to breath, sometimes worse then others, sometimes by labourious breathing, other times by short quick breathing. Most would consider this respiratory distress, today we were told that they believe this is actually a good thing. The consensus now is that this is related to his LPI, this part anyways, but not necessarily everything that is going on. It seems that something ... here is the key questions .... what? ... but, something is ailing James. James is fighting it and this is difficult for people with metabolic disorders. You and I have enough fat, protein, nutrients, etc stored to fight such things, but James is living on the bare minimum and so it is difficult for him to fight. His breathing is believe to be because he is trying to hold his blood gas levels stable ... and he is doing a good job as they continue to be stable. I believe I'm going to have to take a biology course as I'm somewhat lost at times, indeed, how amazing our bodies are.

So this is where they say his is stable. His body is doing what it needs to carry him through. But the question remains what is he fighting?? This is more complicated. They put him on TPN (food by intervenous) on Monday night so that his gut could have a rest and he would get his nutrition again. He wasn't drinking anyways, but this meant he wasn't allowed even if he wanted. An ultrasound was done but nothing obvious came through, the only thing they seen is that there was some fluid in his abdomen which had likely leaked for his bladder b/c he hasn't been functioning properly. So, it could all be a virus that he just couldn't handle. We are also looking at the possibility it is the new formula we put him on as this all happened after we switched him.
Today they gave the go-ahead to start feeds again. We've mixed up his formula again and are trying to introduce this and this alone so we can gauge how his body tolerates it. Once we can get him to take this ...key word, ONCE .... then we monitor what his body does. This in itself is a several day process, but right now the bigger hurdle is to get him to actually drink some. Rob was there most of today so I don't know if they made any progress, but last he said was that he wouldn't take it. Even before he was on IV he refused to touch the bottle, this is why we became concerned as anyone who knows James knows how much he loves his bottle. Is he trying to tell us something?

Does it all add up?? If the formula was the issue wouldn't his system be better by now?? Would it cause such high fevers? Why is he not improving?? Should we be reintroducing it? So, if the formula is not the issue ... WHAT is?? It could be a virus, but no blood work has shown anything yet. Are we going to go through this every virus he picks up?? Lots of questions, we're all very perplexed ... doctors included!!!

The only good thing is that his fevers are no longer as high as at first (103-104.5), they come and go but usually stay below 101. Hopefully this is a sign that he is slowly winning the battle.

Several e-mails have come back asking about our holidays. What started as a 3 week holiday, was shortened to a 2 weeks holiday when we became uncertain of James' stability. Then after his investigation hospitalization the doctor questioned the wisdom of driving and so we again shortened our trip, this time to a 8 day holiday, flying both ways. Well West-Jet Fight #221 left without our family. Our dear girls were very disappointed, as were their parents, but they are doing their best to understand that their little brother is very sick and can't go anywhere for a while. They had so much been looking forward to going on a plane .. that's what comes of talking about something for months .... now I know why we usually keep our mouths shut and don't tell them until a few days beforehand. This one was a bit hard to keep quiet tho. It was even harder when we had to tell Marietta, who's birthday is on Friday, that we shipped all her presents off to BC when Grandpa and Grandma's trailer left. She's an understanding child tho and after her initial disappointment realized that she would still get them, she would just have to a wait a bit longer. We had hoped James would be home by her birthday, but today we had to diappoint her again and tell her that he would not, we gave her a few options and she decided she'll come for a visit on her birthday and then once James is home she'll pick a new day to have her birthday.

Our tired, pale little guy

Well, I am home tonight to get some sleep ... so that is where I'm heading now. Thank you all for your letters, calls and most of all your prayers, I hope my next e-mail will bring a truly stable message/answer!! :)


Whatever it takes to get him to sleep