On managing the seizures

I hate giving him buccal. I hate it I hate it hate it hate it. The midazolam buccal is an anti-epileptic that comes ready drawn in a 2.5mg syringe. We squeeze it between his gum and his cheek, half each side. It's horrid. It smells horrid, it tastes horrid. And worse, it's a sedative. It knocks Kai out and makes him groggy. 

Because that's how we deal with seizures we can't control. We sedate Kai. And I hate it. Hate it hate it hate it. But despite hating it I follow the plan: we give one when he has a seizure of more than 5 minutes, or if he has three seizures of any length in an hour. 

I hate that that's the choice: a sedated groggy baby or a baby that seizes over and over and over again. I'm grateful that we do have something that is currently effective against the seizures, because it was only Christmas when there was nothing that helped, that Kai was in a never ending seizure coma in intensive care. But I hate hate hate that sedation is our only option.

Kai hates it too. He screams when it's in his mouth. As I syringe it in I'm almost crying myself, crooning apologies and platitudes and trying to offer what comfort I can. Some days I debate with myself whether it would be better to let him have the seizures. In between the seizures we'd be in the presence of our little guy, awake and here and with us.

I've never won that argument with myself though, his brain is too precious, as broken as it is. So I count how long each seizure is, I write down when each starts. And when we hit the threshold I give the buccal and then I cry. It's heartbreaking hey, to have to sedate your baby to stop seizures. 

Some days it's just about moving forward, and some days it hits me like a ton of bricks.