A lot has happened since my last post. Jonah seems to have taken a turn for the worse. Almost daily he has been going into non-conclusive status epilepticus. Which is basically him having on and off seizures that last for hours looping in and out of seizures. We need to break the cycle by giving him a dose of rescue meds which puts him in a drunk state for an hour or so then back to normal. The more we give him the rescue meds the greater chance it will become less effective or he will become dependent on it to break seizures. Today he actually had what we believe to be 2 of them. Thankfully, he fell asleep early and is still resting peacefully. We are only allowed to give him rescue meds twice per day and no sooner than 12 hours in between. So, I was feeling a little nervous before he fell asleep.
Another thing that has been going on is that Jonah has been having increased tonic clonic aka grand mal seizures. Today he had 3.
We have been talking to the nurse/doctor at the Mayo and try would like to see him in the monitoring unit tomorrow. We are not sure if they can get us in yet until tomorrow morning.
Thanks for your continued prayers support!