Kai’s seizures have escalated. On Friday they amped up to around a seizure a minute. A *minute*. We thought we were managing. Kind of. We have nurses who were constantly on the end of the phone with us, and we ran through our emergency seizure protocol on loop.
By Saturday we fled to Sams parents for the extra help and come Sunday Sam and I were sleeping in three hourly shifts to ensure not a single seizure was missed. They were never ending, with breath holding, weird apnea episodes where during or after a seizure Kai would stop breathing for a bit.
It wasn’t feasible – not long term. Come Monday we were back home and Sam was meant to be working, and we were both so sleep deprived. Our symptom care nurse called it, we went into A&E to see if we could figure out the cause and then onto hospice for a symptom stay.
We had a new registrar in A&E (and again we went through the spiel, hyperglycinemia is not hyperglycemia, I promise he doesn’t have a problem with blood sugar). We felt like old hands at this. I had the cheat sheet ready with all the contact info, the med schedule, and the big red writing that said cinemia, not cemia.
Truth, we don’t know why his seizures kicked off so much. It could because he’s teething. It could be because we recently tweaked his meds. He could be sick. Too hot. Overstimulated. Constipation. Or It could be NKH progression.
In the end, our Community Nurse snuck our Neurologist out of his office and down to see us in the A&E. I love our neurologist. He’s a guy who loves his job. Who likes his patients, and genuinely cares about Kai. He takes the time to greet Kai, rather than just talk over him at us. He’s a lovely man whose brain moves a kajillion miles a minute. We like him.
Essentially, he told us to go to hospice, and hang tight. We moved the medication thresholds back so we weren’t sedating Kai quite as often, and we waited.
I’ve never been so grateful to get to hospice. Sam and I were so fatigued, so sleep deprived that Sam was asleep before we even finished check in. I fell asleep in Kai’s room, not even making it up to the flat. I’m so grateful for having the hospice support. I’m so so grateful they were there for us. Grateful that there are people who know us, know Kai that we can trust to take care of Kai. I don’t know what we would have done without them.
Sam and I spent the next few days recovering. I had no idea how sleep deprived we were, how much we were surviving on fear and adrenaline. Even having one good nights sleep under our belts, it took a few more days before we lost that hungover, groggy feeling. Sleep deprivation is horrid.
Kai had some hard days. Lots of seizures. Mostly sedated, very little awake time. I hate those kinds of days with him, I really struggle. I can’t settle, and my brain goes a kajillion miles an hour second guessing everything we’ve done, trying to figure out the correlation between seizures and everything else.
We had a conversation with our palliative care consultant. We talked about the meds, and how one of them, the one we upped, an anti-epileptic effects another one, one we hadn’t upped, also an anti-epileptic. They are apparently processed by the same enzyme, and while the hospital neurologists assured us they shouldn’t interact which each other, when we upped the second anti-epileptic the seizures reduce slightly.
Kai started having more awake time, and seemed a bit more with it. Enough, that after a week, we were able to come home. Thank goodness for that.
Even better, once we were home I argued for a reduction back to the original levels, and his seizures came down even more.
Kai is still having seizures. They’re still part of our everyday, and we still often have to give rescue meds. But, we’re away from every minute. We have clear gaps after rescue meds, giving his brain time to recover. We’ve worked out a routine which means both sam and I get some sleep (kind of. Kind of not really, but better than sleeping in shifts). We invested in an angel care monitoring thingamabob so if Kai has an apnea episode while sleeping in his crib, we will know about it. I’m investigating wearable monitors, but we will see.
So, we made it through another crisis period. Thank goodness for that.