Requirements

We asked the doctor today what needed to happen before we could spring James from the Big House. Here's the answer:

1. They want to get him up to full feeds, which is now 83 ml every three hours. ("Last week it was 75!" "He's bigger now.") Assuming he keeps doing as well as he's been doing, this should just be another day or two.

2. After they get him up to the volume of feedings they want, they'll start transitioning him to taking it over a shorter period of time (moving toward a half-hour). But some of this transition could happen at home.

2b. They might also try to transition him to regular formula (or maybe breastmilk). The special formula he's on costs more than twice as much as regular formula and is not covered by insurance (although we're going to appeal that decision if he needs to stay on it).

2c. Of course, they're also still working with him on bottle feeding, but this isn't a requirement for discharge, since he has the G-tube. (I wouldn't be surprised if doing the feedings over a shorter period -- one hour versus two hours, for instance -- helps with his bottle feeding. I wonder if right now he just doesn't have a chance to really get hungry, so he's not as motivated to bottle feed.)

3. They want to make sure his bilirubin is going down. (I think they'll take the next one on Thursday.) It went down between the last two readings, which is a good sign, but if it isn't continuing to go down they'll want to do some additional tests.

4. They want to get his blood pressure under control. It seems to be better with his current medication, but it's not all the way there yet.

5. He needs to have a kidney flow test called a VCUG, which they do for all kids who have urinary tract infections, to make sure urine isn't going backwards into the kidneys. (Apparently there's a treatment if there is this backflow, but we don't know any more about it.)

6. On Friday, he'll have some minor surgical procedures -- they'll replace his current G-tube with a smaller "button" version, remove some of the excess tissue that caused the bleeding at his ostomy site, and do his circumcision. He won't need to be on the ventilator or anything for these, even though they do them in the operating room.

So, although that looks like kind of a long list, it's really not too much, as long as everything continues to go well. Keep your fingers crossed! (I am still holding my breath.)

Jamesie was doing fine when we visited. His nurses said they got some smiles out of him this morning, and they got some smiles from Matthew too while we were there.