January 06, 2009

A new year...a new seizure

It pretty much sucks to be writing this and yesterday was a rough day for our family to say the least. Evan had a seizure and we ended up spending 13 hours at Children's Hospital in DC yesterday. Fortunately my parents were still in town and we didn't have to make plans at 5:30 am about how to get Aria to and from school!

Evan crawled into our bed at about 3:00 am and then had a seizure at 5:30 am. At first we thought he was going to throw up because he kept crunching his body in while lying on his side and making a funny noise in the back of his throat. Then we realized he was doing this consistently every 3 seconds and he was having a seizure. After a couple minutes we began fumbling through the closet for Diastat (rescue drug to stop a seizure) and it was expired. SHIT! We've never seen him have a seizure like this or one that lasted so long and we were starting to get worried that it wasn't stopping. Evan's eyes were open but he wasn't able to talk to us. We were starting to set up the expired Diastat, hoping it would have some effect and were thinking about calling 911. Maybe just the threat of a rectally administered drug worked because Evan’s seizure began to subside. Whew! It lasted almost 3 minutes and Evan sat up and fell instantly asleep in my arms. We called the phone service at NYU Hospital and left a message for the on-call neurologist to call us back. Evan slept until the phone rang a half hour later and I asked him to squeeze both my hands. He did fine with the left but his right hand barely moved. I asked him to squeeze really hard and he said he couldn’t. Prior to surgery he used to have weakness on his left side after a seizure but never on his right side and never this long afterward.

The on-call neurologist suggested we go to the ER to get his head scanned. Under different circumstances we may not have gone to the hospital since the seizure had stopped on its own, but last week Evan fell off a slide platform on the playground and hit his head pretty hard. The doctor recommended we get him checked out thoroughly since he hadn’t had a seizure in so long and it manifested so differently and the weakness in his hand lasted so long.

At the hospital they did a bunch of blood tests and put us in an observation room in the ER until they had an available MRI slot. There was a lot of waiting around and Evan was in good spirits. He charmed all the nurses and when we finally left the hospital we had an armload of toys and stuffed animals they had given him. The MRI results came back with no changes since the one he had last March and we were relieved. One of the blood tests was to check his medication level and that won’t be back for a couple days but we increased his meds a bit and hopefully we won’t see any more seizures. What an ordeal! Everyone at Children’s Hospital was wonderful to Evan and they worked with his neurologist at NYU each step of the way. As we were leaving one of the nurses even gave him a popsicle for the road – his fifth popsicle at the hospital, but who’s counting?

Yesterday was a bad day but today we are happy to say Evan is one day seizure-free. I hope the trend continues for a long long time.


Anonymous said...

Rob & Lisa,
I am so sorry to hear about Evan's seizure yesterday. I will hold you all in my heart, thoughts and prayers.

Bobbi McIntyre

Anonymous said...

Hey Rob & all,
Sorry to hear it too. We always hope for cures to our ills, but I'd settle for a long remission. You were given a year without seizures. Hopefully many more are to come!

Love you guys,
Uncle Rich

Debbie Gardner said...

Sorry to hear about Evan - let's keep the seizure free count going in 2009!!! We love ya!
Debbie, Dan, Matt & Emma

Annette said...

Just wanted you to know I'm thinking about you all.

Mama Lisa said...

Thanks everyone! The good news is that Evan is back to his normal self so we're just taking life as it comes.

Anonymous said...

Lisa & Rob,
I haven't seen Evan since he was a wee little baby. I can't believe how BIG he's gotten! Nor how CUTE!!! He looks so much like Chuck and Rob I did a double take!

Glad to hear he's back to his normal self. Learning to live in the present isn't a bad thing either!


Kristin said...

Man alive, I am so sorry to hear this guys. You continue to be in my thoughts and prayers. Keep us posted!