I'm not sure why I thought this stay in the hospital would be easy and uneventful. Maybe the smooth admission tricked me into it. But after 24 hours of tolerating the formula well and having great ketone levels, Collin starting having seizures Wednesday night. At 7:00 the next morning, they started coming every 5 minutes.
That was when I called Kyle and asked him to come up to Cincinnati. A night of no sleep, dozens and dozens of seizures and a day of lots of decisions ahead of me was feeling like too much to bear alone. Plus, I hate for Collin to be alone during his seizures, which meant that I was barely having time to go to the bathroom, much less get out of the room for a few minutes. I cannot emphasize enough how thankful we are that Kyle works for a company and (especially) a boss who is so flexible and understanding. He packed up and hit the road right away.
Collin continued to have 10-20 seizures an hour for the next couple of hours, getting progressively sleepier since they kept waking him up from his sleep. After a third clonazepam, the seizures started to space out a little bit and he fell asleep at around 11:30 for the next 4 hours. Between that relief, Kyle being there, getting out of the room for a few minutes, and facing the prospect of going home, I was a new woman in no time.
The discharge process took unnecessarily long due to some insurance confusion, but we made it out the door and home by around 8:00 last night.
Collin is still having seizures periodically today and we've been in contact with the Louisville neurologist to devise a plan that will allow us to let Collin get some sleep while we wait to see whether the ketogenic diet is going to work. Based on their advice and our own experience, I think we may temporarily increase Collin's daily dose of clonazepam a bit and see if that helps.
In This-Time-Last-Year news: I was dating a bottle of breast milk to put in the freezer today (If the ketogenic diet doesn't work, Collin will have enough breast milk to last him until he's four. If it does work, I'll be able to donate enough to sustain a small country for a short while.) and I realized that one year ago today was one of the worst days of my life. It was the day Collin was transferred to Children's Hospital and the trauma of this past year really got in full swing. We've been through a lot since then, but nothing will ever compare to the pain of watching my son wheeled away from me down the hall in a big silver box toward a waiting ambulance - his little face looking out through the window - or the agony of walking out of the hospital to go home without him. So, even though watching Collin have seizure after seizure is horrible and I hate hate hate the feeling of not being able to do anything to help him, I can once again say that I am glad it's this year and not last year.