Back at Rusk

Just like Lindsay Lohan, we're back in rehab.

Rusk is the top facility for rehab in NYC and one of the best in the country, and it’s absolutely the right place for Adam to be right now. In fact, I made a bit of a problem on Friday night and over the weekend when the administrators at NewYork-Presbyterian and Rusk failed to get him down here on Friday. The climax of that fuss was when they told me that they’d like me to put down a deposit to cover three weeks of care because Blue Shield is closed on the weekend. But I think they were just putting me off—when I asked them where I could bring the check, or if they insisted on cash, they stopped returning my calls.

That said, compared to the newly-built magnificence that is the NYP Greenberg pavilion, the physical plant here does seem a little dated & dowdy. But the care here is right, the staff are excellent, and the food is much better than at NYP (seriously, it’s like making NYP one of the best hospitals in the country required that they have the worst food I've experienced outside of an airplane).

On the subject of insurance: besides being closed on the weekend, the Google health insurance (through Blue Shield of California) has been awesome. We haven't had any problem at all with approvals, and Google's in-house Blue Shield rep has been super-helpful, including calling me Saturday evening to try to work through our problems. While it’s hard sometimes to know how much benefit our kids get from the material rewards of our work lives, I know Adam and the rest of our family are thankful for the support that has enabled his excellent medical care.

We’re hoping to get Adam out of here and home before Christmas. Wish him good luck.

Successful Head-shrinking

Here's two photos of Adam this morning, showing his now un-swollen noggin.

Back and Forth

On Tuesday, Adam came back to NewYork-Presbyterian to have an MRI and to have a shunt put in to drain the bubble under his scalp. It’s done wonders for his looks (sorry, I don't have a picture right now).

The MRI looked fine; the doctors say he’s doing great and they expect him to have a really strong recovery.

He had the shunt put in Thursday afternoon. It is a bit of tubing (with an anti-siphon valve) that runs from under his scalp (but outside of his skull) down to his abdomen, running just under his skin the whole way. It drains excess fluid, but it’s my understanding that when his surgical wounds fully heal, it will then be idle, as its source is outside of the skull. Putting it in was just a 20 minute operation.

As of Friday morning, he was cleared to leave NYP to return to the Rusk Institute and get his therapy restarted, but we ran into a bureaucratic foul-up; NYP & Rusk wasted the whole day not getting their act together, so we’re still in NYP’s pediatric wing as of Friday night. Last time we went to Rusk, we wasted two days on admitting and insurance paperwork and on actually getting over there. Right now, I fear we’ll repeat that experience, and not get therapy restarted until Wednesday; however, we’re trying to do all we can (with the help of some friends) to get down there over the weekend and get him going on Monday.

Adam is doing well; he seems more comfortable and he’s smiling a lot more. He apparently spent the day asking for pizza; it’s great to have him that engaged & expressive. His doctors all seem to be very happy with his recovery, and we’re hopeful as well.

Rehab (no, no, no)

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.