Cleveland Clinc: Day 1

Monday, 8/13/12:

We got all checked into admissions in the hospital, I got a security badge (anyone going to the Pediatrics section in the hospital has to get a new visitor pass every day, for the kids' safety), then we went up to Philippe's room.

To start everything off we had to hook up the electrodes on Philippe's head for the 5-day EEG. There are 24 leads to put on, one at a time.


First, Kate (the tech that hooked him up) had to measure with a ruler and make marks with a red, soft colored pencil. That's the easy part, and it took about 20 minutes because Philippe was fighting and freaking out. He hates people touching his head and he hates holding still. After she made all the marks, one at a time she had to put each of the 24 electrodes in the right spot on his head. First there's a gritty gel-like soap they scrub on with a swab.

She places the electrode, then takes a small square of gauze dipped in strong cement-like glue (which smells so strong it burns my eyes and nose!) she puts the gluey gauze on the electrode and dries it in place using an air gun, which is loud, cold, and scary to Philippe so he bites, kicks, and screams even more.

Then, using a giant, scary (not sharp) syringe she fills the small interior of each electrode with a special conductor lotion to get a better reading.

I had to lay across his body pinning his chest and arms, and hold his head still with my hands. He's STRONG so it was tough!! Finally they wrapped his head and all the wires with gauze and tape so he doesn't pull or scratch them off..

They monitor his heart, oxygen, and other stuff so they put 3 stickers on his back and 2 on his tummy. He has so many wires all over he keeps getting tangled in. Once he finally calmed down, they had to put an IV line in his hand.

Most of all they monitor him through EEG and video 24-hours a day for 5 days, and hopefully they'll record a seizure. (Too bad he wasn't hooked up before his seizure on the plane!)

I was alone with my 2 kids for all of this! After everything the past 3 days, it wasn't until Philippe was completely hooked up and we were all alone in his hospital room that I held him as tightly as I could and cried. I told him I'm sorry and tried to explain everything, even though I know he can't possibly understand. Philippe cried. Belle cried. I cried. We NEEDED that moment, I needed that moment to let my emotions flow completely unrestrained, which I rarely do otherwise I'd be crying 75% of the time.

Today was rough, but it's just part of our journey to a happier HEALTHIER Philippe :)