Today we met with Eli's GI doc. There was alot of conversation and we were there for over 3 hrs. He is concerned about Eli's bowel issues. Eli's test don't appear to show CDiff. Which is good. The bad news is he apparently is still passing pieces of his intestinal walls because his GI system is so stressed out. He's also having alot of diarrhea still and his bottom is so swollen and red. He has a yeast infection on his bottom from all of it. His urine is showing problems with clearing out his system. With the amount of fluids he's getting he should be passing more waste and he isn't. Which means his body is holding waste. His kidney functions look ok though. He's still struggling with hydration and the more fluids we push the more his GI system freaks out. He's still sweating and his body temp is struggling even more to keep control. When we got to the doc he was as red as a lobster from head to toe, with heat rash all over, and over 100 degree temp. His docs talked while we were there and have decided that all signs and symptoms point to an adrenal crisis. They don't believe that his adrenal system is properly regulating hormones and levels and such, which is making it impossible for his body to figure out what to hold, what to dump, and when to do it all.
They have decided to begin a long term admission on Monday. They don't want to start one mid week as it's hard to get everyone organized. So the rest of this week they organize and make plans and we admit monday. Tons of phone calls, tons of paperwork. His goals for discharge are HUGE.
He has to be able to gain steady real weight. They've given him his FTT back. (failure to thrive) as he isn't gaining anything but bloat weight that he loses the next day. He has to be able to maintain his hydration without upsetting his GI system. We have to have the excessive sweating and adrenal issues under control.
To some these may sound like easy goals but for a kiddo like Eli who is already so fragile, these goals are massive.
Eli's not thrilled and isn't feeling well at all. His body is bucking everything right now and not handling much.
We will update as we know more.
1 comment:
Heather and Bob, our thoughts and prayers are with you. I can't imagine what your heart is feeling right now. If you need anything, or if we can help in any way, please call or text. I pray God moves in a big way and Eli does so much better than expected. Know we are here if you need us and we are praying!
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