Let’s see… Where was I? We last left our saga with our hero not sleeping during his EEG. Two days later our neuro called to let us know that there was good news/bad news. Don’t you love that?
Good news – the EEG showed nothing abnormal.
Bad news – we (neuro, ped, teachers, me) still think there is something going on.
So the plan was to do a 48-hour EEG where Nick would come home with the wires glued to his head wearing a back-pack with the rest of the machine in it. I would have a button to press anytime I saw something that appeared off which would mark that spot on the EEG.
I was gearing myself up for this mentally as someone who has been through it kindly told me “be prepared to not sleep for 48 hours.”
We decided to spend the day before the test at the zoo running around in beautiful sunshine, putting our cares behind us. During breakfast I noticed Nick had goosebumps. He had on light pajamas and the windows were open, so there was a bit of a chill in the air. Within five minutes he was shaking and his fingers were turning blue.
That would be the chills phase. You can set your watch by the spike phase. Within 45 minutes he was burning up at 104.6. He’s had the same pattern since he was very little. Fevers burn really high. He had a fever three weeks ago that only went up to 102 and I thought maybe he’d grown out of the high fevers.
We had to wait until Monday morning to find out if they still wanted him to start the EEG. When the tylenol is working, he appears totally fine. But beware the next spike. If you know me, you may know that not knowing if we were going to do the test was driving me batty. Once we finally got confirmation that it would be postponed one week, I settled into my role as fever-med delivery person.
I must add, that our neuro is running Nick’s EEG next week even though he’s not seeing patients next week. He’s studying for an exam, but wanted to get this test going as soon as possible. (Swoon.)
Twice now I have thought the virus (my suspicion) is behind us and both times after 12 hours of unmedicated Nick, I have found him ice cold and shivering. Set your watch for the burn.
Through all these high fevers, the irony that he’s never had a febrile seizure is not lost on me.
And wildly enough, I have noticed fewer staring spells in the last two weeks. Though I did get to see him at school during part of a Valentine’s Day party and it’s freaky how different he is. Shy, mute, blank. That’s one of the reasons I really want him to be at school for part of the EEG. I will go with and have my little button at the ready. Don’t get me wrong – he loves school. He’s happy there, he just has a different way about him there.
I’m off to deliver the next dose of fever reducer and snuggle up with my little guy. Thanks again for all the well wishes.