A hard day

I can’t write a full post tonight, we’re both just too tired. As soon as I write about being optimistic, as soon as I think it’s safe to go home to try to get stuff done, it all goes wrong, and suddenly we’re on the downhill side of the roller coaster. We’ve gone from the doctor thinking of weaning Lucy off the ventilator early and telling us it would be fine to go home, to a situation he says is “very critical. Worse than a week ago, and definitely worse than two weeks ago.” The problem is complicated, but the main thing is that the yeast isn’t going away, it’s become a little more resistant to the medicine she’s been on, and it has sort of settled in the fluid around her intestines. This is making her little tummy swell so much that it’s very hard for her to breathe, so they’ve had to change her ventilator settings. They’re trying a more aggressive antifungal now, one that potentially has worse side effects (one that Dr. P told me just the other day was much more toxic, so he wanted to avoid). On top of this, she’s not peeing nearly enough, so they’re alternating giving her more fluid and diuretics. I don’t know what it will mean for her if they can’t perfuse her kidneys enough for her to pee.

Anyway, she’s stable right now and not in immediate danger that I know of, but it looks like we might have some rough days ahead of us. I don’t know how people are supposed to deal with this, but I guess they do all the time. If millions of people can handle terrible things on a daily basis, surely I can too, right?