Evening Update (Tuesday 2/3)

I was on edge all morning waiting to hear the results of Max's oral competency test. Worse luck, they were sort of inconclusive. Speech therapist S. was able to get Max to suck on her finger for a good ten minutes, and she determined that the physical parts of his mouth are all properly formed and in the right places. However, S. didn't try to feed Max by mouth because he was pretty sleepy. Later, he got his Maalox dose by mouth, but only by virtue of being held upright by Carolyn while Nurse N. trickled in a couple of drops at a time.

The NICU team enacted all of the medical changes recommended by the peds GI, Dr. P.; this is the unsuspecting doctor I waylaid last night. One of her suggested changes was to take Max off a drug called reglan. If you google "reglan infant" (don't do it!) you'll find a bunch of horror stories and a class action lawsuit. My normal rule of thumb is that if people are complaining about it on the Internet, it must be false. However, Dr. P. told me that there was some cause for concern. Reglan is an effective drug and it's long been used to treat infant reflux, however, long-term use can lead to problems. So we'll see how Max does without his reglan. Interestingly, one side effect is drowsiness.

Otherwise, Max had a very good day. He appears to have vomited up at least part of one feeding (his shirt was wet), and he looked uncomfortable a couple of times, but on the whole he did really well.

Carolyn and Dr. S. discussed the plan for Max. The NICU team laid out a proposed course that will take at least two weeks to complete. In some sense, we'll have to bring home Max sooner or later with a bunch of medical gear, nurses visiting, treks to specialists and so on. We just need to figure out at which point doing so makes sense. And in that vein, our insurance company has been phoning the NICU fairly frequently of late. Perhaps the barbarians will be the solution after all.

(I have to add a postscript: the insurance company has been great about all of this, and they're continuing to act in what may turn out to be Max's best interests by asking the NICU team to explain their proposed treatment plan. Their doctors will review it and decide whether it makes medical sense. I don't mean to equate insurance companies with barbarians in a bad way.)