Teddy’s diarrhea waxes and wanes, but I thought I had been staying on top of it with extra hydration. Then we woke up Tuesday morning to weigh him, and he was down to 9.8 kilos. I weighed him again with clothes on and holding the thermometer and we got up to 10.1. Bad. (His post transplant normal has been 10.4 – 10.8, with 10.6 being most common.)
So… we came back to Iowa City. For IV hydration and to try to get to the bottom of the poopiness. Not because the poopiness itself is necessarily a problem – we can give more oral hydration to stay on top of that – but because it’s making it a bear to keep good Prograf levels (Prograf is one of his immunosuppressant drugs).
Also, his bicarb is dangerously low, and evidently, we probably would have started noticing him panting (or having seizures) had it gotten much lower. Yikes.
Wednesday, he had a scope of his GI system, from both the top and the bottom, and they took some biopsies and cultures. Good times, that. The visual inspection of his GI system seemed good. The doctor doing it said she thought maybe there was some cracking in his esophagus which might mean celiac, but he has a gulten-free diet as it is. The biopsies will tell for sure, but she seemed doubtful that that was the cause. His colon might have some edema, but it was hard to tell.
There was some discussion about trying dietary changes, but the GI doctors didn’t really think that was warranted (yay).
Generally speaking, I think it’s the Cellcept (another of the immunosuppressants). It’s known for causing crazy diarrhea. However, the alternative is known for causing crazy low white cell counts. So there’s a strong preference to try to make the Cellcept work. To that end, we’re trying to move to giving it three times a day instead of two, with a smaller amount each time. We’ll see…