Saturday, November 29, 2008

Evening update (Saturday 11/29) - Holding Pattern

No news is good news so far today -- Max seemed to be holding steady for now. On the northern front: his head circumference either grew slightly or stayed stable (see ME discussion from yesterday). Depending on the measurements and "feel" of his fontanelle, he may have an LP tonight or tomorrow (or not if things stay o.k.). Apparently the neurosurgeons tend to drop by in the late night or very early morning hours. On the southern front: Max is still having problems getting any stools out, and will probably need some help from a suppository later on tonight if past experience is any guide. The dreaded "prune juice" was discussed in doctors' rounds today, but no action yet. Not sure why they are so hesitant to give that to him. Hirschsprung's disease is still being batted around as a possibility, but a definitive diagnosis would require a biopsy of his intestine which they/we want to avoid if possible. Max still shows some swelling/fluid retention but the docs don't seem too worried about that at this point. In less medical news, I got to hold Max for two separate 1.5 hour sessions today, while he was getting fed through his nose tube. He snoozed the whole time and seemed to really like it. Or so I imagine. He's very snuggly and it just feels great to hold him. He's still hooked up to monitors for heart rate, respiratory rate, and oxygen saturation so we have a good read if he is stressed out, mispositioned, etc. while we hold him. It's hard to put him back in the isolette and walk away, especially when his eyes are open and he's peering out. The nurses keep a close eye on him, though, and also hold him sometimes.