Thursday, March 10, 2011

Make That Hospital: Take 8......

So since my last post things have just gotten out of control. Ethan seizures have been increasing more and more. Yesterday he woke up and started seizing right away. We thought we would at least get some relief from the Diastat he had the day before. By 10:00 am we were up around 20 seizures and his neurologist said we had to give him more Diastat to stop the cycle. I gave it to him and it didn't phase him at all. He kept seizing and seizing. Mike called his neuro back and she said he had to go to the ER. So I woke up a sleeping Ethan and a sleeping Taylor, loaded them up and headed up to our local ER. We got there and the seizures did not let up. My mother-in-law came to pick up Taylor, and I set with Ethan as they ordered more and more Valium to try to stop these things. They injected him 3 times with it while we were there and all it did was make him tired and he was still almost constantly seizing. They ordered 2 other powerful drugs to try to stop them and nothing was happening. They finally called an ambulance to transfer him up to his hospital in Denver. Right before we left, he went into a huge tonic seizure. His whole body stiffened like a board and he stopped breathing. I had never seen anything like it, I thought he was going to die! They loaded him on the ambulance and we were on our way back up to Children's. I was so happy to be out of our local ER. They are clueless up there with anything that has to do with his disorder.
Passed out in the ER

The ambulance ride was pretty uneventful. Once we got there he was so drugged out of his mind it was ridiculous. The Children's ER couldn't believe how much they had given him. They said it was enough of just the Valium for an adult male. Ethan is almost 4 and only weighs 38 pounds. Apparently their motto down there is just keep dosing! While we were waiting for a room to open up, the EEG tech came down to hook Ethan up for 24 hour video monitoring. They turned it on and the first thing they said is, "Well, looks like he's got a bunch of drugs in his system"..... Yeah no kidding. By this time he couldn't even sit up on his own. He was just laying there with his eyes open and dilated staring at the ceiling like a zombie.... Oh still seizing. A room finally opened up and by the time we got settled in it was 2 in the morning. Ethan had over 100 seizures this day. Poor guy!

It was a pretty uneventful night. I didn't see him seizing much. I got up a few times in the night to look at the EEG screen and it was showing spikes every few seconds, and full out seizures every few minutes. Ethan however was showing zero outward signs of seizures. When he woke up this morning he was still completely out of it. He still can't walk and can barely sit. The neurology team has been in to talk to me a few times, and it looks like they're trying to push the diet through so we can start sooner. One of the reasons they didn't want us to start it was because they were afraid of the fasting stage.... Well Ethan hasn't eaten for about 26 hours at this point because they didn't want him choking while seizing. He has had zero negative effects from not eating.
Totally out of it, but with his best friends!

He is currently fast asleep. He always has seizures when falling asleep, and they give you a button to push when you see a seizure so they can review it on the EEG. I saw him have 1 seizure and pressed the button, and have not seen another thing out of him since. I just got up to look at the screen, and it tracks the seizures on the side. Even though I have seen 1 seizure, he had 16! So does that mean he's really having 10 or more subclinical seizures for every 1 we see? His video feed is blocking the seizures it recorded even before the ones showing so there are even more I don't see. That is terrifying to me! So here we sit completely unsure of what's coming next. This is all just so frustrating an exhausting!!!!
The seizures in red on the side.

And a big thank you to all those who have donated and spread the word the last couple of days about Ethan's seizure dog fund! I can't believe how generous some people can be, it's just so amazing! We are getting closer to our goal! If we ever get out of the hospital I can start puppy searching:)


  1. I am so sorry to hear about little Ethan! I am in a state of shock at how these seizures have just absolutely taken over his little life. I'm so glad that you are at the hospital with the people who know what to do for him. It's so scary to read that the ER just kept giving him the Valium! Man, we trust these people with our lives!!

    On another note, many parents from our class have asked about Ethan, as do the other kids everyday. I wanted to ask you first, would it be okay if I gave them your blog address? If it's not, I completely understand. Just a thought. We miss him very much! We continue to pray for your family and complete healing for

  2. Yes, please share it! We just kind of disappeared, and it might help to know what happened. Ethan still asks every night if he can "go to school to-mario". We tell him maybe soon if we get get him better and he tells us he's not sick. He's so cute:)