Monday, November 24, 2008

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.