At 2am, Nick and I awoke to the alarm on the pulse-ox. I looked at the monitor, said "uh-oh," and Nick shot out of bed quick as a flash. I came upstairs with the midazolam and sprayed it right away. The convulsions stopped within a couple minutes. Then there was a long period of ambiguity, as her eyes were fixed, pupils constricted, and she shivered and shook violently, seemingly from fever. She was not responsive enough to swallow ibuprofen or water from a syringe through her fixed jaw.
In those questionable moments, a number of thoughts run through my head. "Oh golly, I'm so tired and I can't keep my eyes open. I'm going to be dead tomorrow. What plans will need to be canceled now? How can we tell if this will settle down? What would the EMTs do for her? What would they accomplish in the ER? Do we call 911? Oh, that would wake up the neighbors and boy, we don't need that ambulance bill. Or do we wake up James so we can all drive to the ER, which would be 10x faster. Or could one of us drive her there- could she stay upright in her carseat? Oh Lord, please help my baby. Make this stop. Show us that she is coming out of whatever this is. Oh God, I just want to hug her and drink in her freshly-washed skin and make her giggle. Where is that smile she's always wearing?" Yes, the thoughts come in that order: the selfish ones come first. Because this is routine for us. We're used to seeing her in this terrible state. We do our thing, I think about logistics... Then, as I wait, watching my baby suffer, not seeing the smiley lover-bug I tucked in to bed just hours ago, that's when it hurts and gets scary.
She started waking enough to slowly get some meds and water into her, and she really tried to talk, though no part of her body was functioning too well. As I held her, she kept mumbling "sorry" and a bunch of other stuff we couldn't make out. Perhaps she was trying to describe what she was feeling? Feeling another seizure come on.... She stopped talking, eyes started flickering upwards and she was thrown into another clonic seizure- this one looking more intense, oxygen dropping down into the 50's. I tried another small spritz of midazolam, since technically her dosage was recently increased. This one only lasted about a minute, I think. I hated that one. I told her, "Let's not get into the typical Dravet habit of clustering seizures, honey!" Thankfully that was the last one. But that darned fever never went down far enough. She did sleep safely through the rest of the night and woke up looking bleary but happy and chatty as usual.
Now, let's end with a smile. That cute little smiley, giggley Miss Personality was the first thing to emerge as she came out of all of this. Through her sluggish mouth with her lolling tongue, she was saying things like, "Ahwuuuh rea' book." And when I pointed out how silly it was that there was a pot of water in her bed (for dipping hands and feet), she made the cutest attempt at a laugh. When daddy started reading to her, she started whining and mumbling, "No daaee rea' book!" I asked if she wanted mommy to read instead, and she looked at me through tiny slits in her eyelids and said with her usual adultish inflection one of her most common phrases, "Oh! Sure!" She had us practically cracking up, at 3:45 in the morning.
She's the strongest person I know. A mountain; a fearless tiger cub; my superhero.
Carrying on per usual the next day.
This scene never would have happened in the days of diastat.
Once again thanking God for the safer, more convenient, and way more effective midazolam.
