It’s three weeks since Adam’s surgery, and he’s in the hospital for the 27th day.
Last Tuesday, Adam went from the hospital (NewYork Presbyterian) to the Rusk Institute, a hospital devoted to rehabilitation. We’ve gone from having a view of the East River to having a view of the Empire State Building. He’s an inpatient there, and he’s in various therapies each day: physical therapy, occupational therapy, speech therapy, etc.
Thus far, it’s hard to tell how much difference the therapy is making. Adam is improving, although that improvement has, for me, to some extent been balanced by a growing awareness of how far he has to go.
I’ve read a number of books about the brain, including books that investigate oddities, such as Oliver Sacks’ works. In those books, you frequently have people who can do one thing well, but can’t do something else: they can sing but not speak, or some other similar mix of capability and inability. But I’d never seen this in practice, and it’s surprising and unintuitive: since the surgery, Adam has always seemed quite functional: he speaks, and he has always successfully navigated the standard neurologist quiz: “Touch your nose. Now touch the doll’s nose.”, and so on. That capability, combined with his general crankiness, made it hard for me to recognize how many things he couldn’t do, or perhaps didn’t do, anymore. For many days, he didn’t smile, didn’t converse (although he could speak and communicate, he wasn’t very responsive and rarely said anything novel).
He is improving: he’s smiling now. And we have faith in the ability of the brain to adapt and heal, particularly in young kids. So we’re confident that he’ll be OK, but it may be a while.
As you can see, he has a big lump on his head where the sutures from his surgery are (also, I gave him a haircut, so it’s more visible). The bubble is cerebrospinal fluid communicating through the surgical opening in his skull. It’s been growing a little bit, and he’s due for another MRI to evaluate whether things are OK inside. He may well end up with a drain installed to let excess fluid drain off and relieve pressure on the brain; if they do that, we’ll be back at NYP for a few days.
Laura and I are swapping off spending nights at the hospital. A month in, this is all starting to stretch us a little thin. I’m back at work, at least mostly, and the kids are in school. Grandparents have come and gone, and my mom is here now. But the stress, the disruption, and the logistical complexity of the back and forth is wearing on us and on the kids. Our friends and neighbors have been great, with food, play dates, errand-running, etc.; thanks, all.