Monday, January 26
Well, we're still waiting, and I can pretty much guarantee we won't be going home in the next few days. Last night, the nurse and I thought maybe Faith's belly looked a little swollen. So the surgeons ordered an x-ray, and saw that she has a section of swollen intestine (although she always has...) and that it had quite a bit of air in it. They cut her feeds down to 30 mL every 3 hours, and are giving her IV fluids (D10) to compensate and keep her from getting dehydrated. Then her direct bilirubin (the number that has to do with the cholestasis) was more than doubled this morning, when really it should be going down since she's off the TPN and on the ursodiol medicine, and her liver enzymes were up, too. All together, the signs are pointing to a possible infection.
So, this morning they drew a bunch of labs for blood and urine cultures so that hopefully they can find out what's going on. If stuff comes back negative for infection, then they will have to look more closely at her liver and find out what's going on there.
They are talking about re-starting TPN, which I am going to fight as much as I can, since her liver is already messed up... unless they can give me a really good reason why she needs it instead of eating. I guess one of the reasons they said for cutting back her feeds was "increased emesis", but I don't know why they said that, because she really hasn't been throwing up. She threw up a couple of times the other night, but I think it had more to do with the particular batch of fortified breastmilk, because she'd had 3 bottles before that and she's had probably 10 since, with no throwing up.
Please pray for no infections, and for her liver to heal and work well!!
5 weeks ago