Saturday, January 31, 2009

The immediate future

Carolyn and I are still digesting the huge bolus of information we got at yesterday's two-hour family meeting. Certain topics we've simply decided not to obsess about until we can sit down with a specialist for more analysis.

Max's reflux, and potential surgery to correct it, are on the front burner. Essentially, Max is in the hospital now just because of his reflux. It requires that his feeds be stretched out over lengthy periods, it's inflaming his esophagus, and it's stressing his lung out because he often inhales the aspirated milk. Over the next few days the NICU team are going to try to form a picture of Max's esophagus and stomach using x-rays, barium studies and the like. This will help them plan for his surgery. At the same time, they're giving him one last chance to control the reflux on his own. It's Max's latest race against time (the head shunt and biopsy for Hirschsprung's being the most recent). Max has proved the NICU team wrong time and again, so Carolyn and I continue to hope--with some justification--that Max will avoid surgery next week.

There are good reasons to consider the surgery. But I also suspect that, perhaps unconsciously, the NICU team are looking for any kind of solution, and thus the surgery presents a kind of logical action for them. Without the surgery, I think that they may be at the end of their playbook. Beyond this, there is nothing but continued hospitalization and incremental progress. I'm reminded of Cavafy's poem about Rome on the day the barbarians were supposed to sack it. The barbarians don't, after all, appear that day and Rome's citizens are far from happy. The last line of the poem reads: And now, what's going to happen to us without barbarians?/ They were, those people, a kind of solution.

That said, I can imagine life with Max at home post-surgery. He'll have a g-tube (a direct tube to his stomach from the outside) through which we will feed him. He'll have frequent visits to doctors and to therapists. And no doubt he'll be one fussy infant. I mean, wouldn't you be too? He will be within his rights under the Baby Geneva Conventions to wake us up every two hours and to vomit on all available surfaces. But he'll also be a baby at home with his parents. He will do all those things that babies do that we forget about (because sleep deprivation inhibits memory formation). Why do we only remember the bad things? The other things are fun, and fun is good.