Three days this time. We lasted three days out of hospital.
After having a day or two being seizure free, Kai got hit with a cluster of them. When it looked like we were heading into four minutes, I called it and an ambulance came.
Stupidly we were out without the rescue meds. Never again, I’m carrying them with his notes from now on.
So. Another hospital stay while we wait for an eeg. We’ve got a window view this time. Hopefully we’ll be out before Christmas.
PS. We had that NKH moment where they mistook Hyperglycinemia for Hyperglycemia and insisted on taking his blood sugar levels. They were fine as they would be… he doesn’t have an issue with blood sugar. He has an issue with glycine. #nkhProblems #nkhCanSuckIt
