We saw the pediatrician this morning. She's sort of stumped, too, but it feels good to have someone else stumped alongside me. She consulted KayTar's GI this afternoon and told her she didn't really know what was going on with all of this and the GI doctor replied, "Yeah, that is because nobody EVER knows what is going on with KayTar." We all got a laugh from that. The initial thoughts are these:
1. The fatigue may be due to nutritional deficits or anemia.
2. The breathing weirdness may be a tic. Or it may be caused by diaphragmatic pain from whatever is causing her GI troubles. She doesn't want to write it off, though.
3. The gut trouble might be caused by her g-button intermittently obstructing her gastric outlet. Or she is having some other sort of gastric motility issue.
So today she had metabolic labs drawn to check her nutrition status (she was not a fan, she told me "No, you don't need to do that, I'll let you give me a whole feed, even if I throw it up!" Awww, poor sweetie. She is not a fan of blood draws.), tomorrow morning she has a g-button check under fluoroscopy, and if that is normal (I suspect it will be) she will have a gastric emptying study done. We will also follow up with GI. In the meantime, we're keeping her on the smaller, more frequent feeds and steering clear of meat, as it seems to be working thus far...except for that belly burn. She told the pediatrician that it was "like a volcano about to explode". We recently upped her Prevacid to twice a day, but she is still "throwing up in her mouth" some and having this pain which may be reflux related, so we may look at adding in an additional medication. So that is the plan, hopefully we learn something from all of this testing!
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