fast update

Wednesday, January 28
Just a quick post to update. I went with this morning for the Upper GI test, and saw pretty much the same thing we saw last time. The barium goes down, and then pretty much sits in this one dilated section of her small intestine, and doesn't want to keep going. The good news is, her reflux looked MUCH better this time than it did last time. Jan and I were down in radiology with Faith for around 3 hours or so. Then they came up and did additional x-rays. Finally, when they did the x-ray at the 10-hour point, the radiologist called up and said they wouldn't need to do anymore tonight, because the barium had made it all the way through. Faith has had 2 big barium poops since then.
Faith's IV came out earlier today, but that wasn't a good thing. Since she is still not eating, she needs to get her IV fluids and nutrition, so for her not to have IV access is pretty bad. Four different nurses tried at least 8 times to get a new one started; every time they'd get one, they'd go to flush it and it would blow. Then Dr. Kamath, the neonatologist, came in and tried to start one, she tried twice and couldn't get it. At that point, the NICU people gave up and called Dr. Potter to let him know. A little while later, he came up with the anesthesia attending doctor. That doc tried 3 times or so before FINALLY getting one started in her foot. After how hard it was to get it going, now she is swaddled up tightly with that foot out, and that foot is taped to a padded armboard, which is then clamped to her bed. This IV needs to last until tomorrow night, especially since there is pretty much nowhere else to poke now with how many times she was poked to get this one.
Tomorrow night they will take Faith back to the OR to have a new Broviac put in. They also want to put a feeding tube down her nose, past her stomach, into her duodenum (part of her intestine). I am going to ask to talk to Dr. Partrick (Faith's attending surgeon) tomorrow and ask him why they really think it's necessary to skip her stomach with feeds, because Dr. Potter just said it was because she was throwing up more, and that it would keep her from throwing up. I'm not sure who told them she was throwing up more, and why they didn't mention every time she's thrown up there's been a reason...
I think for now I am inclined to refuse to consent for the tube, and tell them that instead we want to try Reglan in combination with regular feeds, since we've never tried that before, and we know now from the UGI that her issues are mainly motility-related. If she fails, then I think we will think about putting a tube down, but it will go to her stomach, not her intestine. Unless she really starts throwing up, I just can't justify not feeding her as normal as possible.
Anyway, that is all I know for sure right now, other than that I am about to fall asleep! I have more to post, but it will have to wait until tomorrow.