Yesterday continued to be rough. After Soren's 3rd tonic-clonic, he had an Absence seizure. He then had one more 90 second tonic-clonic.
Fearing that if this continued, we would end up in the ER, I paged the pediatric-neurologist on call to see if I could give Soren a second (and more potent) dose of Diastat.
And I've got to say, the team at UCLA is really great about getting back to us. The doctor on call called back in 15 minutes. I told her the situation and she set up a whole plan for me. We were to increase Soren's morning dose of Zonegran 25 mgs. Since it was now 4:00 and the morning dose was clearly past, she said to get this into him before his evening dose. After getting that in him, I was to give him Diastat before Soren had another seizure to stop the cycle. Once he'd recovered from being knocked out by the Diastat, I was to get his evening dose of meds in.
All this went very smoothly. The only rough part for me was when Soren woke up from the Diastat for his dinner. He was understandably shaky from the Valium (that's what Diastat is). He couldn't hold his head up straight as I was feeding him. Seeing him this way was just too much for me after this lousy day, so I lost it.
Now I know I reported my breaking down on our DR trip. And now I'm reporting it again. But I just want you to know that this is not the norm. I usually keep it together pretty darn well. But seeing Soren in this state reminded me of the days when he couldn't hold up his head and was so drugged up he couldn't eat. It made me realize how much progress he'd made and the thought of going backwards was just too much for me.
So I was balling as Aaron held Soren's head up and I fed him. He ended up eating very well, all things considered. I decided I wanted to sleep with Soren, so we set up the fold out couch for us. But that didn't last long because, thanks to the Diastat, Soren was back to his old self (YAY!) and started talking and kicking through the night (trying to make up for inactivity during the day, I guess).
At midnight I gave up and went back to my bed, where we could still hear Soren easily in an emergency. This morning, he woke up his usual chipper self. The shakes are gone and he can hold up his head again. We gave him the day off from school, figuring his body has to be exhausted from all that seizing and all those drugs.
I know mine is.