Monday, May 4, 2009

Another visit to the phrenologists

Carolyn and I took Max to Children's today for another visit with the irrepressible B., the pediatric neurosurgeon who is following Max's hydrocephalus and evaluating him for an indwelling shunt. I took Max to visit B. a month ago. At that visit back in March, B. described Max's ventricles, which are swollen enough to make for a terrifying x-ray, as "generous", thereby earning our undying loyalty. B.'s latest bit of uplift was to describe Max's severely delayed progress as "hitting his milestones at his own pace".

Unfortunately, if Max's ventricles used to be generous back in March, they've since evolved into Mother Theresa. As part of our visit, Max got another CT scan on his skull. B. showed us the most recent results compared with those taken back in March. To the untrained eye, Max's hydrocephalus has gotten markedly worse. To the ever-optimistic B., Max's hydrocephalus had maybe gotten 2 percent worse, or possibly 5 percent, or maybe 10 percent at the very most. His head circumference (which we aren't monitoring daily anymore) has also increased. However, while not yet dangerous (one hopes), at this rate, Max will absolutely need a shunt in the next couple of months. B. has scheduled a follow-up visit for early June. My guess is that if Max's ventricles do anything but become less generous between now and then, B. will schedule Max for surgery. As he was wrapping up, B. gave us his standard line that he was "going to bet on Max".

Perhaps it's simply the exhaustion, but Carolyn and I face the prospect of the coming month's uncertainty regarding Max's shunt with equanimity. In the hospital, we were in a largely passive role: things happened to Max, nothing was under our control. Now that Max is home, we control his feeding schedule, his environment and we make sure he gets sufficient and correct therapy. For the first time in six months, there's a lot of Max's care that we control. Allowing those parts we can't control to play out is somehow easier now.

Here's a picture of Max getting a CT scan of his head:

Tomography in action