Sunday, June 15, 2014

Seizing the day? No, he seized today.

Wednesday morning was no different from any morning. Zacchaio was his usual joyful self when his eyelids started turning a bit pink and his sleepy nose and eye-rubbing ensued. I laid him on his stomach on the couch next to me and patted his back to help him drift off to sleep. Just as he was getting himself comfortable, he took on a belly flop position (with an arched back) and started to have full-body shakes. I continued patting his back for a full 5 seconds with the initial thought that he was more anxious and restless than usual, but something began to not feel quite right. I gently turned him over whispering, "you're okay love bug..." but he wasn't. He had turned a dusky red color and gone as rigid as steel. I yelled his name and he didn't respond. I shook him somewhat violently and he didn't respond. I slapped his cheek and he didn't flinch. I pulled him into my chest thinking my warmth would magically wake him up... but that failed, too. When I pulled him away from my body one last time, he went from rigid to completely limp. He started to turn purple, blue-lipped, then a dark blue/gray from head to toe. Even though I was holding him tightly in my arms, I felt as if his soul was slipping between my fingers. I screamed in hysteria. I was frantic, then debilitated, mad at Zacchaio and then mad at God, and then I got it together.

I checked for a pulse, and there wasn't one. I started doing chest compressions while trying to dial 911 with trembling hands. 9-9-1-1-1-1-1. Come on! 9-8-8-1-1. Damnit! And finally after a deep breath and a pause from compressions, 9-1-1.

He came back. God let him come back! He might have only been gone for a single minute, but his short absence felt like a lifetime of loss.

The paramedics were there within 10 minutes and Aidan within 15. I caught Aidan just before the school buses departed for the 8th grade Great America trip. Thanks, God. Sorry for being mad at you earlier.

The paramedics had Children's Oakland in mind as our final destination, but after a convincing monologue about the rarity of our son's condition and all his specialists being at UCSF, they somehow pulled strings and were able to get him there. I was grateful for their persistence, as seeing the familiar faces of our medical family was incredibly comforting, especially during a time of such anxiety and fright. Thanks, God. Sorry for being mad at you earlier.

I had to tell the story of my son's departure and return to every doctor that came through the ER. It never got any easier to tell. We were soon transfered to the ICU where he was closely monitored while physicians bought themselves time to work up whether he had a cardiac or neurological event. Within an hour he had another episode, this time without the violent shaking. He suddenly appeared to be stuck in a gaze, started turning grey-blue (not as dark as before), then came to within 30 seconds and got his pink color back. Physicians ordered an EEG (which looks at the electrical activity in his brain), however before the technician could arrive, it happened again. With a couple of dirty looks from Aidan and me, they put some urgency on the EEG technician and it was on JUST in time to catch his third seizure, which I managed to capture on video about 10 seconds in...

We immediataely started a loading dose of Phenobarbital (a powerful sedative/anti-convulsant) to get the seizures to stop, which it was successful in doing... at a price. Believe it or not, it was almost as painful watching him wake up a phenobarbital zombie as it was watching him seize in the hospital. It was unknown to us whether or not our sweet and cheerful son would ever return to us post-seizures and medication. An entire 24 hours went by before the light in his eye returned. In fact, he was back with more energy than ever before! Although he exhibited the severe lethargy associated with phenobarbital, he also had the rare side effect of hyperactivity! He was almost dangerously spastic, but I was grateful to have a spastic Zacchaio than the alternative.

Test results...

The EEG captured one focal/partial (isolated to one part of the brain) seizure with other small random misfirings in Zacchaio's right temporal lobe. The right temporal lobe is responsible for long-term memory, and visual/auditory recognition and processing. The neurologist told us they would not expect to see any irreversible or long-term brain damage based on the small number and short durations of his seizures. They validated their theory with MRI imaging that showed no brain injury. Thanks, God.

Zacchaio's brain MRI showed no structural abnormalities (often the cause of seizures), which leads the neurologists to believe that his seizures are being caused by mutated brain cells that fire at incorrect times in incorrect directions. 

The MRI did find thickening in the back right portion of Zacchaio's skull. Their finding is consistent with his hemihypertrophy and one-sided overgrowth. Their concern is that if it continues to thicken, it could potentially infiltrate the space into which his brain needs to grow. 

Tomorrow we will start trying to wean Zacchaio off Phenobarbital and onto Trileptan, an anti-siezure medication with fewer serious side effects.

God is forgiving and blessed us in ways that I couldn't see until now. I'm grateful our baby boy is still with us and in the hands of our loving God and UCSF family.

No comments:

Post a Comment