So... we're back at hospice on a symptom stay. Kai deteriorated, and we got into zero awake time and frequent seizures. Because we had so much advice, I went with what I thought was best, which was to not tinker with his anti-epileptics and to increase the NKH meds. It's been a while, and I'm pretty sure his glycine is through the roof (spoiler: it totally was. Two weeks later once the bloods were back I was proven right - his glycine was at a whopping 600, when he's usually around 250 - 300).
It's nice to be at hospice at times like these - we're taken care of. We're around people who aren't sleep deprived, who know Kai. Who are capable with all the things, with the seizures and the meds and the comforting. He's in a good hands, when we're at hospice.
It also means that we get a chance to do family fun things. Like hang out in the sensory room, go swimming or introduce Kai to the ball pit in soft play. It makes a difference hey.
Sure enough, after a few days Kai gradually became more active and alert, and the seizure count went down and we were able to go home again. High five us.
I'm so grateful we have the support we do in hospice. Hospice is a kajillion times better than hospital. I don't know what we'd do without them.