Chapter 10, Recovery continues, sleep-talking-boy, and shunt internalization.

Two years ago today, Sam had his EVD (the brain drain, aka "the tube") removed and replaced with an internal drain, called a VP shunt.

The reason he needed it was because there was too much pressure in his head still and he needed to have a "pressure release" valve. A "VP shunt" is a ventriculoperitoneal shunt and essentially re-routes any excess fluid that is in the ventricles (or center part of his brain) into his peritoneum (or abdominal cavity). The fluid gets re-routed if the pressure gets too high, his body re-absorbs it, and it's all good.

We had been explaining to him that the tube was going away. Cindy (one of the Child Life specialists) and Charlie The Stuffed Gorilla (with some help from a stuffed pelican with a tube taped to the top of its head) explained the whole procedure to Sam. He was on board with the plan and wasn't especially scared. I wish we'd been able to adequately prepare him for how badly he was going to hurt from where they tunneled under the skin on his scalp, neck, chest, and abdomen to thread the tube down to where it needed to go. Poor buddy. I think it may have actually been more uncomfortable than the big surgery, which took us all (and by that I mean Sam, me, and our family) by surprise.

From Facebook:

April 9, 2012 9:08pm
I've been too busy playing for a real update today! Two walks, experimentation with a walker, markedly better balance, an eye patch, cranky moments, happy moments, good eating, no narcs, and super stable ICP.

The plan: surgery to internalize the shunt at 7:30 tomorrow morning. If there aren't any complications now or in the future, this will be the last surgery. We should be headed home for a short while in 2-3 days and then we'll come back up early next week for portacath placement, prep for radiation, and a lumbar puncture. Then 6 weeks of radiation, 6 weeks off, and 6 cycles of chemo (probably 4 weeks per cycle, maybe longer depending on how he does).

We're excited to get the tube out tomorrow and get back to playing without dragging a pole and a drain bag everywhere we go.

Sam's been talking in his sleep a lot. This is nothing new, but I've certainly been listening more attentively in the last 10 days. (Don't ever take your time with people you love for granted, ok?) Last night he was talking a little and, when I got up to check on him, he was lying with his eyes open. "Are you awake, Buddy? Or just sleeping with your eyes open?" He was silent and, just when I was sure he was asleep, he said, "I'm not awake or asleep. I'm just lying here waiting for it to go back to normal."

April 10, 2012
7:51am
Off to OR, giggling in anticipation of the purple popsicle he'll be able to eat when he wakes up.

7:53am
And, yes, I did have him say "purple popsicle" after he'd been given Versed and, yes, it was really freaking cute.

10:43am
shunt placement went "perfectly" according to Dr. F. We're back in the room, eating the promised popsicle (blue instead of purple, but we don't care). And, most importantly, there's NO TUBE!!

Yeah, it was after that last post that the pain really started kicking in. He was surprised and I think his trust level took a hit. We were all so positive about the internalization and how things would be "better" after he didn't have a tube hanging out of his head anymore. None of us had thought to tell him that he wouldn't be "all better".

He was and is a resilient guy though. With the help of awesome nursing staff, we got his pain under control and he was feeling significantly better before the end of the day. Still bummed, but better.

Plus his little cousin came to visit, which was fabulous.

Next post: Chapter Eleven, "The most expensive gas bubble" and "Home again, home again, jiggity jig".