Wednesday, November 9, 2011


Gowned and masked, I once again wheeled my son into the anesthesia room. I looked around at the entire surgery team realizing that, after ten months of intensively managing Spike's care, I was now turning over complete control to them. Everything that I have done and tried to do is nothing compared to what they are about to attempt. They will remove a part of his brain that at this point is only harming him, keeping him from living a full life.

Spike continued to watch Mickey Mouse on his iPad as we pushed his gurney next to the table. The team knows well enough now to make room for me so that I can keep hands on him and help transfer him. As I laid his head down, I assured him I would hold his iPad so he could keep watching. Other kids are given Valium before anesthesia, Spike prefers to control his own sedation with games and videos of his choosing.

His eyes flicked away from the screen for just a second and seemed to look around the room but I knew better.

"Hands on him, please. No needles. He's about to seize," I warned them, keeping the iPad in his field of vision with one hand while reaching across to hold him down with the other.

I looked at the nurse across from me and said, "No matter what, you or someone else has to stand right next to him every minute or he will roll off when he seizes."

The anesthesiologist, sitting at the foot of the table, assured me, "He can't have a seizure now. We have anesthesia flowing. He will be fine."

"Whether he can or can't, he's about to," I said, looking at the nurse. She nodded and kept hands on.

Spike looked away from the iPad and up at me so I closed it and bent close to his face.

"It's going to be ok buddy. The doctors are going to fix you this time. I'll be waiting for you with Popsicles when you wake up. I love you Spike."

For the first time in 10 months, he looked just a little worried. I tucked the iPad under my arm and held his hand as he looked up at me. They put the mask on and he gave my hand a little squeeze.

"You need to step away now, Dad," the anesthesiologist said.

"Not yet I don't," I replied, knowing what was coming.

Spike's eyes moved left and the seizure began.

As I have done thousands of times in the past year, I held his right hand as he turned, keeping him stable and looked up at the clock.

8:48 - the final entry in Spike's seizure log?

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