Ok I have a little more energy now so I'll tell more about what has happened the last 2-3 weeks.
Charlie started waking up from a dead sleep just screaming. She'd been waking up agitated, and sometimes whimpering, but after a couple of weeks she was full-blown screaming for sometimes over an hour. She did this for about a week and then she started screaming during the day too. By that time I was pretty sure it was her feeds causing it because she was also retching more and would get better if I turned her feed off. By Saturday the 24th she was screaming when we'd just feed her pedialyte so we took her to the ER.
They did x-rays and a ct scan and put her on IV fluids. They couldn't find anything physically wrong with her or her tube. But we did determine it was her feeds. She'd scream after someone examined her belly and she screamed when they gave her the contrast for the ct scan and screamed when they tried pedialyte at 10 mls an hour. :-(
So we discussed our options. I talked to 3 different doctors about the pros and cons of a PICC line. Pro: She'd get fed. Cons: Very susceptible to very serious infections, over long-term she'd suffer liver damage, her nurse wouldn't be able to do anything with the PICC line, and we'd still have to do some meds in her tube and over time that could become painful for her (it already is to some extent). I decided it wasn't worth it and took her home. The next day we decided to take her in for a tube change. They didn't see anything wrong with the tube, but what the hey, ya know? She actually did a little better on her feeds for a few days after that. Then she started going down hill again.
She started waking up in a cold sweat and her HR was erratic, on top of all her other problems (she's also been battling some kind of illness, culture came back + for psuedomonas). I took her to the pedi and he said his only suggestion was to try a gut rest. That would mean a PICC line for about a month and then trying her feeds again. He agrees that a long-term line is not a good solution.
So that's where we're at. I told palliative care what he said and they are going to discuss it at their meeting. And we'll go from there.