Cleveland Clinic: Day 2

Philippe got a PET scan (a unique type of imaging test that helps doctors see how the organs and tissues inside your body are actually functioning). He was hungry and grumpy because he couldn't eat or drink since dinner last night. They gave him some radioactive medicine to help highlight the images of his brain better for the scan. Then they gave him an intensified sugar solution in his IV so they can see if parts of his brain aren't metabolizing sugar properly, which might explain the seizures. While the sugar was kicking in they did a 20-minute EEG to watch his brain waves. Then it was time for the sedative. The sedative  they use has a small component made from eggs, but Philippe is allergic to eggs and since it goes straight into the blood stream through his iv I was worried. The anesthesiologist gave him Benadryl first then gave him the tiniest dose to get him to fall asleep. He fell asleep really fast. I took Belle upstairs to wait in our room while Philippe went into the machine to do the PET scan. 

PET Scan Machine

Crystle had finally arrived!!! After 2 days of sleeping in airports and all the traveling she was exhausted so she was sleeping, but it felt SO good to not be alone in our hospital room anymore!

I put sleeping Belle in her crib and went to the recovery room to meet Philippe there. I didn't have to, but I missed my cute little boy and wanted to make sure he was ok. The anesthesiologist said she'd given him another dose of Benadryl after the scan, but his lips and ears were puffy. 

As soon as I sat down I saw Philippe start to have a seizure! It was more mild than usual, probably because of the allergic reaction and the sedative suppressing him, and no one else even noticed until I said, "he's having a seizure. Why isn't his EEG box hooked up?!" The nurse even said "are you sure? He's having a seizure?" Then he felt the tensing and stiffening, but he told me that even though Philippe still had the electrodes on his head, on that floor in the hospital they didn't have the machine to plug him into that monitors and records the seizure. 

By the time the tech got all the approvals from the anesthesiologist, the nurses on our floor, and the doctors, 20 minutes had passed and the seizure was over. My sweet, brave little boy had had an allergic reaction, and a seizure, and there wasn't much they could do about either! I was frustrated, but was trying to be patient because I know protocols are in place to keep patients safe... But he'd had 2 seizures in 2 days. He usually only has 2 or 3 in a week, so now we'd have to hope, pray, and wait to see if by Friday he has yet another seizure so they can actually record it.