Sunday, May 10, 2009

Crisis averted

I'm writing on a piece of paper in a plane on my way home from a weekend away in Chicago with my mom. Last night I was awoken by Joe calling at 4 a.m.

Dermot had been having seizures every thirty seconds for the last half hour.

I'm always amazed how I function in a crisis. No time to freak out. I know that the maximum time the doctor wants a seizure episode to last is 10 minutes, then we're supposed to take action.

Joe was alone with the three kids. Two of them sleeping, as typical kids do at four o'clock in the morning, the other's brain, short circuiting every half minute.

One: what's going on?!?
Two: Focus Joe
Three: time to administer the Diastat (rectal Valium), this step was hard. You see the whole time Dermot has had his disorder, we've never had to use this emergency medication. It's about two tablespoons of creamy medication packaged in a syringe that is inserted into Dermot's rectum.
Four: call aunt Katy on the other phone, get her over to the house so Joe is not alone.
Five: call neurologist on call.
Six: wait for doctor to call back...
Seven: answer call from doctor, turns out we did everything right. Dermot stopped seizing, started crying and started to relax and feel the effects of Valium. Katy arrives, Joe is not alone anymore. Dermot will fall asleep shortly.

Crisis is over. It takes me two hours to get back to sleep at my hotel room.

We've made many changes since I last posted. Dermot has been off the ketogenic diet for over three weeks, we added a new drug (Felbatol) to Dermot's regimen, after four completely sleepless nights we deleted that drug and added Topamax. For about two weeks, Dermot's observed seizures went down from 40-50 per day to 5-10 daily. A HUGE improvement, we even had one day when he only had four seizures. Amazing, right?

There's a virus traveling thru the family, it's Dermot's turn. After Dermot calmed down, Joe took his temperature, 101. My theory is that the fever caused his breakthrough seizures, let's hope so.

Eight: Prepare for the future as much as we can and let God chart the course on our journey with Dermot. Pray for him.

Peace out.


Fawn said...

Oh my, how terrifying! Good on you for being so calm and organized and smart. ("Good on you" sounds totally inadequate, but I can't think of a better way to put it.) I, too, hope that it's the sickness that caused the break-throughs -- it does sound very likely. So glad to hear that the Topamax seems to be helping so much!

Sending you lots of good healing energy.

Liz said...

You and Joe must be exhausted. Poor little guy. I can't even imagine how scared you must be during something like that.
I'll do my best to send good juju your way.

Anonymous said...

Scary...glad the medication helped. Aunties are amazing!!! I hope the new rountine works and even improves things!!!

Anne said...

There are no coincidences....We welcome the Sullivan family to their new neighborhood. Although, I have not yet had the pleasure of getting to know the Sullivan Boys, God has helped guide me to them. Since you all have moved in, just a few houses from us, there has been a force greater than myself helping me find my way to you. I have encountered many road blocks along the way, and yet I kept pursuing what I thought was the path laid out ahead of me. The drive within me to seek safety for all of our children, became a compelling force within me. I trusted my inner drive, even though others either argued with me or gave up on me. I now know why God gave me the strength and courage to find you.

I just would not give up. Nothing was making sense to me. I was not at peace with the answers that were given to me in response for my quest for saftey. Not knowing what I was looking for or where I could get help, I thought that maybe the internet would give me answers. I googled Joe. Nothing came up. I then googled Suzanne, and I was led to your blog. (Until reading your blog, I had never seen a blog before.)

As I walk by your house, or glance over at night to see if lights are on, I feel blessed to have gotten to know you all a little better. Thank you for sharing your story. Hopefully, I will be able to continue to get to know you all.

There are no coincidences, Anne (A friend of Bill Wilson's for over 20 years)