Saturday, May 30, 2009

Random thoughts from Target

insurance companies....Topamax...where did I park? where's the $ coming from? smile and try to remember that woman's name...I hate Jon and Kate plus 8...my arm is getting tired from holding this basket I should have gotten a cart, but then I would have spent too much money, I curse you Target!!!! check the visa bill...we haven't sold the casco house yet...my stomach hurts...I'm doubting my program because of my codependency...write this down before I forget...when does the childcare end? why is Dermot still sick? why does his body jerk and tremble when he has a fever? what is the Topamax doing to him? why is there not just one doctor instead of six in charge of Dermot's health? Is Dermot going to die before me? I'm calling the insurance company now.

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.