April 13, 2011

Benjamin's managed to ward off a hospital stay for almost 7 months and I'm so proud of him for that! But here I am, typing from the Neurology ward at Children's 9NW. The episodes Benjamin's been experiencing are in fact seizures and they've been escalating since my last post. This has been one of my biggest fears. He started on the Keppra about two weeks ago and he's been nothing but a mess. One of the side effects to the medication is "hostility" and boy has he been irritable! We could have handled the irritabilty, but the continuation of the seizures has driven us crazy. We've gone up twice on the Keppra with no improvement whatsoever.

I had a gut feeling yesterday wasn't going to be a good day. Benjamin had two short seizures even before his OT session at 10am. During OT, he had another one that lasted about one minute (it doesn't seem like a long time, but when you're living it, it's an eternity). Needless to say, we ended OT early, I took him home and called the neurologist. Her recommendation was to give him an extra bolus of the Keppra and increase his regular dosage going forward. A few hours later he had another seizure and his face was turning blue. He came out of it briefly and then seized again. I called 911, the ambulance took us to South Shore where we stayed for a few hours. In the ER we saw our two favorite RTs and I was so grateful! There's nothing like seeing a familiar and caring face when you're in a not so great place. A few hours later, the docs loaded him up with Phenobarbital and we were en route to Children's. Once we got here they gave him another huge dose of Phenobarbital and he was pretty much done for the night.

We were a little worried this morning because he was like a little rag doll; unbelievably floppy. We were so afraid this was what he was going to be like going forward, but we were put at ease when neurology rounded this morning and told us they slammed him with the drugs and he would normalize after a few days. They said he would basically feel drunk for two days.

He's hooked up to the EEG through tomorrow to make sure the other unusual behavior he's exhibiting all the time (the head turning and eye fluttering) isn't a seizure as well. We know the mouth drooping and lip smacking is definitely seizure activity, but we're hoping this other stuff is just Benjamin being quirky!

We're keeping our fingers crossed that he remains seizure free tonight and we can go home tomorrow. Although the nurses and doctors have been wonderful, I don't like sleeping here and I miss Jadyn.

She was home with me and my mom yesterday when I had to call 911. I was afraid she could sense my panic and was going to get all upset, but I should have realized that wasn't going to be the case. She was her usual self, and was entranced with the commotion. As I was running around the house trying to gather what I would need for the hospital this little voice ws right behind me telling me I had better move it because the guys in the ambulance were waiting for me!