It appears that we'll be spending one more night here. We had a wonderful surprise visit from Raya's GI doctor, whom I love dearly, and we discussed everything that's happened this week. To put it briefly, the overnight feeds weren't tolerated as well as we had hoped and she's lost a little weight since we've been here. Even though we're feeding her directly into her intestine now, she's still vomiting. I'm regretting ever having complained about the formula vomit because empty stomach vomit is WAAAAAAYYYYYY more disgusting. The extension tube that was plugged into her G port overnight smells like a skunk. She's been throwing up either fluorescent greenish-yellow bile or dark grayish-green stuff that looks like pond scum when it's coming out of her mouth but then somehow manages to dry almost clear on her shirt. It smells horrible too. So yeah, not going to complain about formula puke EVER again.
Anyway, she also had a consultation with the geneticist last night about the possibility of mitochondrial disease, which we're all pretty sure she doesn't have since she doesn't really match any of the symptoms. He ordered a couple of blood tests but said that he doesn't expect them to come back positive and most likely won't need to see her again. He was a lovely man but I'm glad that we won't be spending time together regularly. :)
One good thing is that the bleeding in her stomach seems to have stopped. She's going to go off of the med she's been on for that & hopefully won't have a recurrence because I'm ready to be done with that stuff. It was the main cause of my sleep deprivation for the past month. The new cause of my sleep deprivation once we go home will be her 6 doses of water per day. I know, it sounds funny that she's been prescribed water but she's going to be switching to a higher-calorie version of her current formula and will be fed at a much slower rate so she'll need more fluids than just what she'll get from the formula. 'Twill be interesting. :)
So anyway, we're hoping that the new formula/feeding schedule will go better and she'll be able to gain a little weight by tomorrow and then we can go home. That would be fabulous.
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