Friday, February 6, 2009

Evening Update (Friday 2/6)

Carolyn spent absolutely all day with Max at the NICU, a first for her. No side conferences with specialists, no nearby errands to run, and, of course, no lunch. I've said in the past that managing the NICU is like a full-time job; today I think Carolyn erased the line between simile and reality. She is quite literally managing (at least part of) Max's care. We've become increasingly worried about Max's oral competence--his ability to use his mouth for anything other than crying--as he's racked up more days in the NICU. Today Carolyn talked to one of the nurses, M., about this and whether M., or any other nurse, could try to dribble just a few ccs of food into Max's mouth, encourage him to swallow, and watch him to make sure he didn't aspirate. As I describe below, M. has signed on to the project, even though she wasn't Max's nurse today.

Otherwise, Max did well today. Carolyn said that she thought that Max was just a normal baby, doing normal baby things. There was a three-diaper rodeo with bonus surprise urination, a classic of infant care. Max slept sometimes, he was awake sometimes. When he was awake, he and Carolyn played with developmental toys (he has no other kind) and read The Very Hungry Caterpillar. He remains fascinated by the last page, where the caterpillar becomes a beautiful butterfly. Max's feeds are going in over 105 minutes, with some thought to compressing them to 90 minutes this weekend. At rounds, Carolyn asked why everyone was so concerned about Max's habit of vomiting part of his feeds--after all, don't babies normally spit up? And indeed, today's attending made sure to write an order to keep Max's feeds somewhat compressed even if he did vomit up a little bit.

There was about a 30 minute gap between Carolyn's departure and my arrival. I didn't know about the plan that Carolyn and M. had worked out; indeed, M. wasn't even Max's nurse today. When I got to the NICU, Max was resting in his crib (which means, on his wedge) and emitting little mewls of displeasure. I got him out and held him while talking to his nurse, P. Without preamble, nurse M. walked up and said "Tell your wife I got Max to take 10 ccs by mouth earlier, and he did fine". Then M. leaned over to me and said "Carolyn and I are going to raise hell around here." M. has signed up to be Max's day nurse next Monday, Tuesday and Wednesday. Management is all about organizing and motivating; it seems that Carolyn now has the whole NICU team oriented around her vision for Max's care.

All of this happened during the 7:00 PM shift change, where I got to see beloved nurse B. again. She's taking care of Max tonight. I said that this was like a victory lap for Max, visiting all of his old friends before coming home. But of course he's not coming home any time soon (although maybe Carolyn and M.'s secret feeding program will move faster than expected).

As I was leaving the NICU around 7:30 PM I got a call from Felix's pediatrician. I'd called her earlier in the day and she was just then getting around to returning her calls. I think no one works harder than a pediatrician. I had called her to ask about the longer term clinical course of kids who had had Nissen procedures as infants. The NICU team only follow their patients for a few months. As part of our research into the Nissen, I wanted to hear how patients did, say, five years out from the surgery. Dr. J. was extremely reassuring. When I asked her how she would pick out the kid with the Nissen from a random group of ten year olds, she said she would look for the one who was "slim and trim". Although the Nissen doesn't interfere with getting sufficient nutrition, and children with Nissens seem (eventually) to have normal appetites, in Dr. J.'s experience, they're a little on the skinny side. Dr. J. also said that the g-tube remains in place for up to two years following the procedure, but more as a safety measure in case follow-up surgery is required. There's no day-to-day need for it past a certain point.

Like most pediatricians, Dr. J. had a little pat speech about reflux, which she delivered during our conversation. She described four categories of reflux, none of which were "preemie babies with NG tubes", so I guess Max doesn't quite fit. One of her categories was "happy reflux": babies who smile while they vomit all over the place. Another was "screaming reflux": babies who scream hysterically while enduring reflux. This speech crystallized a vague anxiety I've had for some time: why doesn't Max cry more? I had to have the nurses and Carolyn assure me that he can cry and that he sometimes does cry, for example, when his diaper is being changed for the third time in as many minutes. But when he's vomiting or in obvious discomfort from reflux he doesn't utter a peep. I worry that this is a sign of cognitive deficit. And then it struck me: I'm freaked out because my baby doesn't cry enough. Given the universe's ham-fisted sense of humor, Max will soon start to scream and not let up until the mid-term elections (and he'd have every right). But this is a long way from where we started.

And, at tonight's late night call in, B. told us that Max loved his bath, and was making eye contact with all the nurses ("flirting"). B. also told us that Max seemed a little less uncomfortable tonight than over the past couple of nights. He can't quite smile yet, but I wonder whether Max is simply happy.