Wednesday, February 4, 2009

A day at the NICU

Carolyn and I went to the NICU together this morning. As we were arriving, we met nurse K. in the hallway outside the NICU, pushing Max in a transporter--a portable NICU crib enclosed in lucite (see video clip at the end of this post). From what we saw, and as confirmed by K., Max really enjoyed his jaunt; a trip in the transporter is the closest the child is going to come to a car ride for a while. No wonder he liked it.

K. and Max were returning from a barium study of Max's esophagus. Although the official results will take some time, K. reported that as soon as the barium hit his stomach it refluxed straight back up.

I changed Max's diaper in the transporter because the "wedge"--the big inclined plane in Max's crib designed to help control reflux--makes it almost impossible to change his diaper. Here's a video of Max just before I went in:

I held Max during his first feed of the morning. Because Max's feeds are so slow--almost two hours--I got to observe quite a lot of NICU life that I normally miss. It's important to do your homework in the NICU. Here's Carolyn studying Max's "chart", which is really a big binder with all of his medical records: archaically it's mostly handwritten--penmanship counts.

Doing homework at the NICU

(Carolyn is wearing a mask because she didn't feel well today and didn't want to spread germs.) Max slipped out a few smiles (none of which I was able to capture on camera). He and I admired one another:

At the NICU with Max

Max's reflux continues to be quite severe. Although he didn't vomit all day, he was clearly uncomfortable and had several "wet burps". His nurse tonight is the sainted nurse B., who has Max again only because the NICU has been consolidated. She reports that Max vomited up about 10 ccs earlier tonight, but that he seemed otherwise fine. The picture that's emerging is of a child with really severe reflux but who is otherwise okay (his hydrocephalus may pose problems in the future of course).

In addition, Max doesn't yet exhibit full oral refusal, and he does manage to swallow some medications, like Maalox, that he has to take orally. Carolyn characterizes this as a race against time--even with speech therapy, he'll lose interest in suck-swallow-breathe, the basic mechanics of oral feeding. Nonetheless, this race isn't lost yet.

Finally, I got to participate in "rounds"--the NICU team's daily ritual of visiting each bedside and discussing the patient's developments and treatment course. Thanks to her study of Max's records, Carolyn tortured the NICU team a little bit. I'm sure the residents prep for Max a little better than they do for other patients. However, I was fascinated by the formal ritual of the presentation itself. The resident discussed a series of bodily systems in what seemed like a hierarchy of importance (heart/lungs, neuro, GI, etc.) and described the current state of each system even if there was nothing out of the ordinary. The presentation started with what must be a phrase that the NICU team say or hear dozens of times each morning; they're no doubt inured to it. "Baby boy, day of life 103...". To the NICU team, a clock started running the instant Max was born, a few days ago it hit triple digits.