64 days. It was truly uncanny how it happened today. I had an appointment with Dave’s neurologist late this afternoon today. I knew he would ask, so I went to the calendar and started to count. Dave always follows me around, ESPECIALLY when I go to the calendar. He was watching me counting and realized what I was counting. So when I got to Day 64 I looked at him and said, “Hi five buddy, it’s been 64 days since your last seizure!”
I then went into my office and wrote on my word document (I keep my own notes for every doctor appointment we have). I wrote, “No seizures since last time. It’s been 64 days!” And then I wrote ’64 days’ on the calendar. And then I knocked on wood. Because I just knew I had jinxed it…
I had 5 minutes before my Zoom call with Dave’s doc. He was sitting outside my office, as usual, working on his puzzle, gym mats all around him, to keep him safe. Even after 64 days, I take NO chances after he busted up his face on the tile floor last January, coincidentally enough.
All of a sudden, I hear Dave make some weird high pitched noises/almost ‘word’ like. I jumped up and saw him sitting on his mat, knees down and hands down, almost like he was getting into prayer stance. And he just stared. I called out, “Dave.” He didn’t answer me. I knew immediately. I called out to Ronnie who was upstairs working on his songs. Dave’s neck started to contort. I looked at the clock on the microwave so I could time it. Ronnie ran down as Dave’s body started to violently shake. Every limb was contorted. He looked like he was in so much pain. He struggled for breath. His face began turning purple. He was making ‘zombie’ noises and gasping for breath. Ronnie held him and I had my hands on him, repeating over and over, “It’s ok my love. You are going to be ok my love.” He was choking on large amounts of red saliva (assuming he bit his tongue). I kept my eye on the clock. If 5 minutes pass, we need to call the ambulance. So far it was about 2 minutes. He was starting to come out of it but he was also still purple and gagging. It was taking a long time for his breath to come back. I kept my eyes on the clock and my hands on him. Ronnie was cradling his head. Finally about 3 .5 minutes in he started to come back and I breathed a momentary sigh of relief. It’s was the longest 3-4 minutes of my life. Seriously.
Ronnie stayed with Dave while I got on the Zoom call with the doc. We had gone 64 days. That is something. But obviously he has some triggers we haven’t found yet. To date, we know some of his triggers and we’ve addressed them. And 64 days is damn good compared to him having 2 a day. Or having them every few days. But there is still something we are missing. We’ve all scratched our heads and thought of everything. We may never know. I’ll take the 64 days. For now…
There is no good thing about seizures. BUT, Dave’s seizure dog trainer has been wanting a ‘sample’ for months. He wants a shirt Dave is wearing during a seizure so he can start ‘scent’ pairing with the seizure dog. I sure as hell wasn’t going to cause a seizure just to get them this ‘scent.’ But now they have one. I guess that is something …