Evening update (Sunday 11/30): Another day at the office

Summary: In reaction to his noon feeding, Max had a repeat of his earlier episodes where he spat up some of his feed, his belly got big and taut, his breathing became rapid and shallow and his oxygen sats strayed often into the 80s. The NICU team delayed his 3:00 PM feed until 5:00 PM, by which time his belly had softened and his breathing had slowed. They also gave him a glycerin suppository. On the northern front, they measured his head circumference at around 4:00 PM and found it had decreased 0.5 cm.

We need a term to describe the big freakout when a team of docs and nurses who haven't seen Max before observe him spitting up, having a taut belly and being constipated. It's always a slightly dimished rerun of the Great NEC Scare from a couple of weeks ago.

Carolyn has described a day at the NICU as "a day at the office". And today was a prime example of that phenomenon. I walked in to find Max in the midst of a classic digestive-tract blowup: taut belly, panting, associated desats, etc. The NICU team debated getting an x-ray. Then they kept bringing up an LP. After all, the main problem with Max is his hydrocephalus, so why not tap him? I left the NICU to make a phone call and returned to find everything laid out for an LP.

I sat down with the fellow (effectively, the on-site NICU team leader) and asked him to explain to me the thinking that would lead him to tap Max in response to really bad constipation. He explained that they had done some tests that had ruled out a neurological basis for his tachypnea (ie panting). This didn't strike me as an argument for tapping Max; in fact, quite the opposite. Eventually, he argued himself into the position that he shouldn't really tap Max. As we were talking, we learnt that Max's belly circumference had fallen, and that his tachypnia had stopped. I then had a terrible case of "seller's remorse"--what if the fellow's clinical judgment had been right all along and he was just bad at explaining it to a layman? I was somewhat reassured when they measured his head circ and found that it had decreased from yesterday. So, on balance, I at least think that I didn't do any harm by interfering with the NICU team's original plan of action.

As a general matter, though, I wonder how much management work parents are supposed to do? And whether it helps or hurts? Carolyn notices the occasional error (e.g. running his feed over 60 minutes and not the required 90 minuts), and of course today I affected the treatment course fairly significantly. Does this kind of clinical monitoring decrease errors by the NICU team ("Better double check anything you do to bed 16, those parents parents are detail fiends")? Or does it earn us reputations as problem parents, thus inhibiting the free flow of information from caregivers ("Don't tell the parents of bed 16 that we accidentally ran his last feed twice as fast as we were supposed to--they're total fiends for detail")? It's natural to try to curry favor with the people who are with your children around the clock, and it's disturbing to think that they would be making mistakes if you didn't monitor them.

Midday update (Sunday 11/30)

Carolyn and I spent the morning rearranging bedrooms. When Max comes home, he'll move into the bigger room, and we want Felix settled into the smaller room well before then.

Overnight, Max got a suppository at midnight, which allowed him to stool. His belly is soft. His head circumference has remained stable for the past two days.

We're going into the NICU now.

Evening Update (Friday 11/28) -- Not a bad day at all

We spent the day at the NICU, and we also spoke with docs at Children's. In sum, not a terrible day at all. In fact, almost a good day.

On the northern front, we met with the attending for the day, who told us that he wasn't shocked by Max's head circumference growth. He also said it's not unusual to get a reduced volume of fluid via the LP, and that some of the CSF leaks out through the puncture anyway. He characterized the situation as a "holding pattern" while we wait to see if Max's body can learn to properly absorb CSF on its own. If Max's body doesn't, Max will need a shunt. But Max's doc doesn't expect any kind of emergent need to tap Max's ventricles in hurry. He's happy to wait a week or two to see what happens.

Max's attending also told us, and perhaps I misheard because I'm optimistic, that, at the moment, the hydrocephalus per se wasn't doing Max any damage. Any damage would have happened within a day or two of birth, but might not become visible until now as the body cleaned up waste, dead blood cells etc and the resulting holes in the white matter were uncovered. Is this bad news or good? It's a dilemma that has divided frequentists and Bayesians for a long time. But the midnight thought that somehow Max is suffering damage right now turns out to be wrong, and that's oddly comforting.

On the southern front, my personal diagnosis is that Max has scary constipation. His bowels don't move, gas builds up, his belly swells and the night staff freak out and quit feeding him. During the day today he got most of one feeding before spitting some of it back up and all of another while Carolyn held him. The high-tech medical team will convene again shortly to decide if it's appropriate to hit Max with the strongest medicine in their arsenal...prune juice. I'm not kidding. Well, he's too young to eat an unripe green apple, which always does the trick for me.

More on our conversations with docs at other hospitals later.

But on balance Carolyn and I feel much, much better this evening than we did this morning.