Don't let the scowl on his face fool ya. That kid loves the attention he gets when he has a "Brain Test" (EEG). What kid wouldn't? You get to stay up until midnight the night before, wake up at 5:30 the next morning, not to mention the doting nurses and a trip to McDonald's before going back to school for a measly 3 hours...I mean really!
I know it looks as if he's just had major brain surgery, but they just have to wrap up his head so the wires stay in place during the test...and with his massive locks of curly hair...he needs some serious wrapping.
After our last appointment a few weeks ago, the doctor decided it was time to do another EEG to get a better idea of where we're at...because at this point no one really knows anymore. This time they did a Video EEG so that they could use it for a better reference down the road.
It is always an interesting experience. They get him all hooked up and then start recording his brain activity. For the first 1/2 hour they just have him watch cartoons...they give me a button to push every time I notice him having a seizure...this just puts an extra marker on the record to make comparisons with.
The next part is the pinwheel. Hyperventalation induces seizures, so they give him a pinwheel and have him blow quick breaths on it for 3 minutes.
The next part is my favorite...the sleeping part! They turn off the TV and lights and have him sleep for 1/2 hour...just as any concerned mother would do, I too take a nap so he doesn't feel all alone in his napping--I'm thoughtful like that.
Then just when I'm hitting my REM sleep they wake us up and put a strobe light thingy like 3 inches from his face. He keeps his eyes closed, but for about 3 minutes or so varying light patterns flash. This is where I like to do some break dancing. You just have to take advantage of moments when you're in a room by yourself and there is a strobe light available. At least that's my motto.
More cartoons while they take all the wires off and get as much of the goop out of your hair as possible. Quite honestly I often wonder why they even take the time to try...you really need a full wash down to do the job, and with that kids hair--well, it's just not pretty.
So...the results of the EEG?? I don't even know how that kid is functioning. He is amazing to me. The doctor called and said the test showed that Luke was having an average of 13 seizures per HOUR. Do the math...that's upwards of 312 a day. Back to the drawing board...clearly the new medication is not working out, so for now they have had us put him back on the Zarontin. We will meet with his doctor in a couple of weeks to see where that takes us again.
Say a little prayer for our Lukie!
On another note...I overheard a neighbor asking Seth if he ever got to stay up late...his reply, "No, but my brother Luke did last night because he had to get a brain test today..." I was too tired to explain...
6 comments:
Only you could tell such a story with grace and humor. Prayers are on going.
That's scary. Poor Luke. Hope they figure something out with that kid. And how are you so funny?:-)
With all that Luke has going on, he is sure lucky to have a good humored mom! You are amazing.
You said it, that Luke is amazing. I love that kid. We'll send up more prayers. I think we should have a fast for him to ring in the New Year...I'll get the word out - maybe you can pass it along to your side of the family - if you want to. ( : Love you guys. Can't wait to see you in Feb.
I'm sorry to hear about Luke's progress. It's a good thing he's got "Momma Love" to take such good care of him!
Luke is such a trooper, and so are you!
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