Sorry for leaving everyone hanging. It's hard to update when things are so crappy. It's much more motivating to type out long posts about positive things.
Anyway, we still don't know what the heck is wrong with this kid. She did better for like a week and a half but then she started screaming again. We are going to try erythromycin again for gut motility. So hopefully that helps. We tried it in the past and it helped, but then they changed it (?) and it stopped working so we quit using it. I talked to both of her docs again last week and her pedi admitted that the "gut rest" was grasping at straws. He's just the type of doctor who doesn't want to not have an answer so he suggested that, at a loss.
So, unless the erythromycin works wonders, it's probably still down to a PICC line or putting her on hospice. We can *barely* get enough calories into her to maintain on her good days. But kids can't just maintain, they need to gain. And she already looks like a concentration camp victim. No exaggeration. Normally her nurse gives her a bath. I change her diapers and stuff of course, but I don't often see her completely undressed. She doesn't hang out half nakey like other toddlers do. So I gave her a bath today and I was just *shocked*. I hadn't realized she'd gotten so bad. And then I broke down crying after I put her to bed. Because I realized she needs a LOT more calories than we can even imagine fitting into her. If the erythromycin works wonders, she might be fine. But if it only helps a little, she'll continue to starve. So it would still be down to a PICC line.