Longer story

Here is the short version of what happened: We turned off Blaise's feeds last Wednesday night and put them on at 10 mL/hour Friday morning. Then she went to 15 mL/hour on Sunday, 20 mL/hour on Monday and 22 mL/hour on Tuesday, with a plan to hold at 22 for a few days before bumping to 25. Late afternoon yesterday (blogger mis-dated the blog post; it was Wednesday), I changed another diaper with blood in it. Feeds off for 4 hours and now we're back at 20 mL/hour.

Of course, there's more to it than that. On Saturday morning, I told her care team that I thought the feeding increase schedule (which wasn't going to get her up to 20 until today) was way too conservative given that nothing actually seemed to be wrong. They all nodded and said they had to check with her surgeon, but that we might be able to pursue a more aggressive increase plan. Then we didn't hear anything. Sunday morning, I asked the care team what the plan was. It turns out that our surgeon was out of contact for the day because he was on a flight to Hong Kong, but he had given the fellow and the attending on call free rein to change Blaise's feeding plan. We went up to 15 and she had no problem. We went to 20 on Monday and she had no problems. She was at 22 for over 24 hours with no issue and then the blood. They turned off her feeds for 4 hours, during which we got to go for more x-rays, and then went back to feeding at 20 mL/hour. She had no visible blood overnight or this morning. I saw the tiniest possible trace early this afternoon.

Here's the thing: Blood in stool can come from a lot of places, anywhere between the nose and the anus. The darker and more mixed in it is, the farther up it's likely to be from. This blood is bright red and separate from the stool, which means it's probably coming from somewhere pretty far downstream. Blaise has a couple of fissures near her anus and a bit of broken skin on her bottom from the very fierce case of diaper rash that we were told to expect. I'm beginning to suspect, and the nurse practitioner seems to agree, that this might not be a bowel problem at all, but a skin-level irritation issue. Of course actually diagnosing it as such is likely to be a huge pain. No one likes to see blood and it can be a sign of such worrisome things that every time we see it, we'll have to eliminate them. No word yet on how this affects plans for home. We're planning for the end of the month, with or without the IV.

What does Blaise think of all of this? She hates having her feeds turned off, but otherwise, she's not sure what all the fuss is about. She laughed out loud for the first time this weekend (at her Grandpa Tom) and has given us a few more giggles in the last couple of days. She's also been very playful and energetic, so she's keeping the mood light for us. Blaise makes all of this easy.