Detroit PET scan - Day 3

I'm surprised I remember most of this day, I am so tired. Last night was horrible. Dominic wasn't allowed to eat after 2:00am, so I woke him up to nurse him at 1:30. Probably not the best idea since he was in a dead sleep, but I knew if I didn't feed him, he would be starving later. But pretty much after that until 6:00 am he was inconsolable. He was crying and fussing no matter what I did. If I put him down, he screamed. He didn't want his thumb or a pacifier. He rocked him, I walked around with him. Nothing worked. The nurse finally gave him more Tylenol and he seemed to calm down a little. But then he proceeded to have 3 seizures in the following two hours. He finally fell asleep in Mamma's arms at 6:00.

Dominic and his Mamma

Just hanging out with Mom

A happier moment

Finally falling asleep in Mamma's arms

We were then discharged at 7:30 am and sent down to the PET center. He still had the electrodes on his head because they do another 30 min. EEG prior to the PET scan while they let the radioactive dye they inject circulate through his body. Yeah, that was weird too - being told your baby would be radioactive for the next 24 hours and to keep him away from other kids. That sounds safe! Anyway, after the 30 min. EEG they removed his cap and the electrodes and we realized why this poor baby had been so fussy. He must be allergic to the paste they use to stick the electrodes to his head, because he had 26 open sores and blisters all over his poor little head. Some of them were bleeding and some still had puffy blisters and some were just open sores. The poor, poor thing. No wonder he was in so much pain. I felt so awful for him. We got him cleaned up and he went in for the PET. They sedated him and the scan took about 25 minutes. After that, we waited until he woke up, shampooed his head and slathered him in Neosporin. They wanted to have the doctor check him out to make sure the blisters weren't a reaction to the radioactive dye, rather than just the paste. Finally, after he was checked out we were released. Now I just had an hour drive to my sister-in-laws and then another two hour drive home to look forward to.

Giving him the dye

Taking off the electrodes

Poor baby, all those blisters!

Going in for the PET

It doesn't look like it, but he's happy to go home

We're ready too!

Mitchell, Dominic and I finally arrived home around 3:30 and the rest of the night was mostly a blur, I was so tired. I had emailed Dr. Chugani asking when we would get the results and he promptly responded that his EEG was currently being reviewed and we'd get the PET results Friday. I'm pretty sure we went out to dinner so I didn't have to cook or clean. Then it was off to bed. I'm very happy to be home but I am anxious to find out what the next steps are. In the meantime, we'll try to relax, enjoy the weekend and catch up on sleep.