Another Sunday at UICH

Randy and the kids have headed home, and Dr. Nestor (the other nephrologist I haven’t met yet) stopped by.

First, I got my questions about the G-tube answered. They went up to 15 cc/hour today, which is more than he has ever eaten in his life. He’s not eating anything orally at all today, and that bugs me. The goal here is to get him up to a “normal” level of food via continuous feed to make sure it goes OK, and then back off with a shift minimum or some other scenario where he gets to eat as much as he wants by mouth, and then gets the rest of it at night via continuous feed. We’ll see how this goes, I guess.

Second, his labs were screwy for a day or so (Thurs) but since then, they have been spectacular. His BUN came back down to in the 50s, creatinine is hanging out in the 2.4/2.4 range, electrolytes all look relatively OK. I asked Dr Nestor if the plan was still to head to NICU and start dialysis tomorrow, and she said, well, that is still the plan, yes. However, her report to Dr Jetton this morning was that we may want to reevaluate that plan. He no longer has any immediate, hard indications that he MUST start dialysis right away. It might have just been his body having a hard time because it wasn’t getting enough calories.

So… we’ll see. Certainly, there’s a delicate balance here, but if we can hold off on dialysis, so much the better. As I’ve said before, he’s tended to do better than anyone expects.

So, it sounded like we’ll still be here for several days, regardless, while we continue to adjust feeds and make sure he does OK with that. I still don’t have a room at Rossi (and probably won’t, since NICU families get priority, and I think cancer patients on peds get second priority, and us lowly kidney failure parents get jack). I’ve got all my “stuff” here in his room now, but I can’t really unpack or anything, so I can’t get to most of it.

But at least the nurses don’t mind me sleeping with him in my bed. (If I were them, I’d have a heart attack. The bed slants, and because of his feeding tube, I have to put him on the outside, slanting down, with no rail or anything. I roll up a baby blanket and tuck it under his hip to prevent rolling, but dang.)

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