Friday, October 21, 2011

One More Kick In The Teeth

The Child Life music therapist stopped by today with a guitar and whole cart full of noise-making devices. I knew that Spike would enjoy some music time as he always insists on listening to music in the car. The therapist asked which song he would like to sing with her and he immediately chose one of his favorites.

"Kick In The Teeth" by punk metal rockers Papa Roach.

That choice set her back a bit! She claimed, and I can believe it, that she did not know that song. Before he could suggest an even more inappropriate tune, I threw out "Working on the Railroad" which made everyone happy. We then launched into a medley of age appropriate (boooooring!) tunes with Spike pounding away on anything that would make noise. He  had a great time and showed an amazing sense of rhythm. No idea where he gets that from.

As I mentioned yesterday, Spike had only one test left before he could leave while the doctors considered next steps. Unfortunately, the MRI required six hours of fasting as it involves anesthesia. That seemed unfair to the poor guy as he had just come off the ketogenic diet and was enjoying his new found food freedom. Even worse, he was a standby in the schedule so we didn't know when he would be called. That meant he had to start fasting last night at midnight even though the test would likely not occur until late afternoon.

Spike, being Spike, never uttered a word of complaint.

The test went fine but he did have a cluster of seizures while still anesthetized.

Upon returning to his room, we packed up and prepared to check out of Hotel Hospital for a weekend of freedom while we waited for all the results and recommendations. I knew that he would still have dozens of seizures each day but staying in the hospital wasn't stopping them anyway. At least some time on his feet would help him regain strength ahead of surgery.

Spike's brain had a slightly different plan. Even as discharge papers were prepared, he went into a particularly nasty cluster of longer than usual seizures. You can never really know what s going on with these things but we do have a reasonable hypothesis. Spike was just beginning to come out of ketosis yesterday due to the cessation of his diet. So what do we do? Put him on a long fast - which increases ketone levels.Following the MRI, we broke the fast with a normal meal, causing the ketones to plunge again. This game of yo-yo with his blood levels almost certainly worsened the seizures - in duration if not frequency.

One of his neurologists happened to be on the floor as this cluster picked up steam. While we considered whether to go to Chicago, Raleigh or simply stay in Cleveland, he made it pretty clear that, in his opinion, Spike shouldn't even consider leaving the hospital, much less hitting the road.

Time to unpack the car, find another hotel and absorb yet another kick in the teeth.


Say what you want, take your shots.
You're setting me free with one more kick in the teeth

Kick in the teeth (na na na na na)
What doesn't kill me only, 

will make me stronger in my head

No comments:

Post a Comment