The neurology triage nurse called me bright and early this morning to get an update on Connor and let me know how things were looking on his end. They weren't able to get us a cancellation appointment for today, but they did find an appointment with the epileptologist for us tomorrow morning, which is still pretty darn amazing. Next-day appointments at top-of-the-line, super-specialized clinics like this one just don't happen. It's the medical world equivalent of dividing by zero. So apparently we win the "Congratulations, Your Child Is So Sick That Even The Super Special-Type Specialists Are Freaking Out About It" award.
This is not really an award I ever wanted to win.
At any rate, Connor spent most of today still pretty sedated from the Diastat. He had these completely limp-noodle legs going on, so every time I carried him around it felt sort of like I was holding a ventriloquist doll. He alternated between sleeping, snuggling, and telling me he didn't feel good and was tired and sad. It was pretty heartbreaking, but at least he didn't have any seizures.
He started perking up a little in the late afternoon, and by the time Jer got home he was sitting up pretty well by himself again and had started to take more of an interest in what was going on around him. While it was nice to see him feeling a bit better, it also was an indicator that the Diastat was starting to wear off. This means that I'll probably need to watch him pretty carefully on the drive up to the hospital, as I'm not sure how much of it will still be in his system and I don't really want him to start having seizures again on the highway.
I really have no idea how this appointment is going to go-- I had no idea epileptologists even existed before a couple of weeks ago, so I don't really know what to expect. I'm just hopeful that we'll walk out of there with a concise game plan about what to do.
I really wish I had a magic wand sometimes, and I could just wave it and fix this.
2 days ago