Ethan woke up from his nap a good hour or so later. He was acting a little off from then on. Mike got home, Taylor went down for the night, and I started making dinner. I was watching Ethan and something was just off about him. His eyes were slightly dilated, and he was a little sedate. I made the comment to Mike that it almost looked like he was in non-convulsive status. Not listening to that Mommy voice, I went along with what I was doing. About 10 minutes later Ethan started up into a big tonic clonic. I heard Mike say he's having a big one, and when I saw him it took a minute for me to realize this wasn't a normal seizure. We watched him for about 5 minutes and it wasn't stopping or letting up. We gave him the Diastat and it started getting more violent and he started choking on his saliva. After another 5 minutes we called 911. He was having something called status epilepticus which is a life threatening condition that involved a tonic clonic seizure that is prolonged. This can result in brain damage or even death. Unfortunately children with his condition are prone to this and this was the second time this year it has happened. Once the paramedics got there he was starting to come out of it. It had been over 15 minutes by this point. They took him in so he could be watched.
Once we got there he was obviously completely postictal and sleeping. They said there was nothing they could really do but watch him for a while to make sure, as the ER doctor put it, "He doesn't stop breathing because of such a huge dose of Diastat." That was his normal dose but I guess his normal dose is enough to knock an elephant on its butt or something. They called up to his hospital while we were there just to discuss things with that doctor and even though she had never treated him apparently she said she knows all about Ethan, and he's well known up there. You NEVER want your child to be well known at a hospital, especially not one as big as Children's. They deal with the toughest cases in Colorado and the surrounding states. I had assumed his case was middle ground to them, but maybe I was wrong.
|Sleeping with his Mario!|
They let us go a couple hours later even though he started vomiting right when we were being discharged. We got him home, gave him a bath, and got him down to sleep. Of course I didn't sleep because I had to check on him every 5 minutes to make sure he was breathing! He had one other seizure through the night that I saw, but has been acting fine this morning. He was up nice and early at 6 am on a Saturday morning, that's my boy! So that was our night, and our 7th trip to the hospital in 5 months. Ethan continues to be so strong. It doesn't even phase him even though he's getting poked 4 times a week for blood draws and IV's. I wish I could be as brave as him:)
|My boy, flying a kite for the first time!|