On the seizures are getting worse

Way back in NICU, when they told us about the seizures, I imagined that they'd be like the seizures you see on tv, the big grand mal ones with shaking and jerking and frothing. I was prepared for this big Acute Event, capital A, capital E.

Turns out our acute events are quiet. A small, tiny, twitch that won't quit. I've been watching Kai's hands rhythmically clench for almost two hours now. My babies brain is broken. So so so broken. 

I know which bits. I know why. I know which genes have a missense switch, I know how the p-protein isn't doing what it's meant to. I know his brain is broken. I'm  heartbroken there isn't a way to fix it. So I watch the twitches, and wait for them to morph into fully blown seizures. We've already escalated. We did the first buccal five minutes in, after the first seizure that didn't quit. The second fiveteen minutes later, when he was still twitching and seizing.

We even went as far as the next step, the rectal paraldehyde (that was good as far as lightening the mood went. Hard to be in tears when you're holding your babies bum cheeks together and poo slides out in between your fingers). We've never gone that far at home before, and it worked for a moment or two.

Then the twitches were back. Even as I was holding his hands, his movements didn't stop. That's how you know it's a seizure. So we escalated again, and gave a quarter loading dose of phenobarb.

The last time we did this was Christmas Day, the day he was admitted to intensive care. 

The fear, I have it. I have it in droves. This time I know we won't go to hospital. We won't be admitted to intensive care. Our symptom care nurse reassured me that we can manage this from home, that we were still a day or two away from a continuous infusion, and even then, we have a giant toolbox of meds underneath our bed to manage that. The emergency IV box for just in case. 

And I hate that it's there and I hate that we need it and I hate that just in case is absolutely a possibility.

My baby is in a drug induced stupor, a groggy horrible dozey state, so so far from his happy self, and still with the twitches. It's heartbreaking. I'm sleep deprived, because I can't sleep when my baby is sleeping through the night. Sam and I are taking it in turns to sleep, which isn't feasible in the long term, but allowing Kai just to seize isn't an option. It just isn't. 

I hate this. I hate NKH so much. This is why we fundraise. This is why we're looking at putting on events. If you ever wanted to hold a bake sale, or a BBQ or a poker night for NKH, please do. Do it now. 

I have The Fear that with each escalation point on our seizure plan, we move away from symptom care into end of life. The Fear. I have it.