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.

Morning update (Friday 11/28): A lot of bad news

We've gotten a lot of bad news over the past 12 hours. Max's head circumference grew sharply yesterday afternoon; they tapped him again last night but only got 4 ccs of CSF. This suggests that, perhaps, his CSF is no longer communicating between the ventricles and the spine. And in the ensuing 8 hours his head circ grew again. No word yet on what the plan is.

His belly expanded enough to alarm everyone. They stopped his milk feeding and returned him to IV nutrition. They took an x-ray, presumably looking for signs of infection. That great medical authority, Dr. Google, indicates that people with cerebral palsy often have problems with their digestive systems. Who knows what's going on?

Finally, Max continues to retain fluid and appear somewhat swollen, despite efforts to change his diet, reduce is sodium and increase the protein content of his feeds.

Midday update (Monday 11/24)

Carolyn went in this morning to hold Max and to monitor medical developments. In addition, a nice man from Georgetown's building services retrieved her keys from the elevator well where they'd fallen last night. Also, Max has passed the 30 day mark, entitling Carolyn and me to free parking in the Georgetown garage. I'll report back on whether we get to use the card-only entrances and exits.

Max currently has two major medical issues: the head bleeds and the gut problems. We'll write more detailed descriptions of each problem, but you might find our earlier description of the Great NEC Scare useful background for Max's gut problems.

On the head bleed front, Max's head circumference grew over the weekend to just about where it was before Saturday's lumbar puncture (aka "tap"). Haifa tapped Max again around 11:30 AM and got about 10 ccs of CSF. The doctors report that Max's spinal area is becoming more fibrous and difficult to puncture. At today's tap, Haifa was able to get in with one stick, but had to move the needle around a little to get fluid. Rather than tap through an increasingly thick mass of fibers, Max's doctors are strongly considering installing a reservoir, which seems to be a kind of permanent tap through the skin of the head. More on this as it develops.

On the gut front (which we can't resist calling the "southern front"), Max pooped last night after Becky gave him a suppository. Max is scheduled for a barium enema study to help determine whether or not he has Hirschsprung's Disease (see The Great NEC Scare for more detail on Hirschsprung's). One of the surgeons dropped by Max's bedside and told Carolyn that he no longer thinks Max has Hirschsprung's, but this is based on, and I quote, "a hunch". The definitive test for Hirschsprung's involves a biopsy of the intestine, something we're eager to avoid. If the southern front problems aren't caused by Hirschsprung's or NEC, what are they caused by? What are the leading candidates? That's a great question, and I look forward to the answers.

In other news, physical therapist Anna dropped by Max's bedside. Max has a big day scheduled (LP plus barium enema) so he won't get physical therapy today. However, Anna did say that when she examined Max on Friday he was gestationally appropriate. Let me translate from medico-jargon: Max was bright-eyed, curious, looking around, waving his arms and legs around and doing all the other things that preemies of his age should be doing. This is good news, tempered only by the fact that, at this age, preemies shouldn't be doing a lot. Nonetheless, if there's one thing I can confidently say about Georgetown's NICU, it's that they never succumb to the soft bigotry of low expectations when it comes to their patients. It's hard work being a preemie in that place; they don't coddle those kids.