Tuesday, October 21, 2014

Video EEG Monitoring at CHOC

Yesterday, Jenelle and I checked into our new home for a few days at Children's Hospital Orange County (CHOC.)  Jenelle was hooked up to a video EEG, and we'll be here anywhere from 3 to 5 days for monitoring.  The last time we had a stay at CHOC, Jenelle was in a crib; so this has been a new experience for us.  She is doing well in the hospital bed, and we have a large room to ourselves with a pad on the floor so she can play. I was relieved they had a pad for the floor because - yuck - hospital floors, and YAY, she can play with her toys more comfortably!

So yesterday evening, we marked what we thought were small, short absence seizures.  In speaking with Dr. Tran today, as it turns out, the seizure activity I marked wasn't seizure activity at all!  Apparently, it was just Jenelle being Jenelle, and her "non-responsiveness" is more behavioral - i.e. Jenelle just likes to check out of a conversation once in a while!  Gee, don't we all?

The activity we marked last night was very, very similar to her absence seizure, except she wasn't drooling.  I just figured we didn't have drool because they were so short.  good to know, but frustrating that we haven't caught any seizure activity. The doctor is going to decrease her medication tonight to see if we can get more seizures. 

I know it sounds weird to ask for prayers for seizures; but truly it would help to capture seizures on the EEG so please send prayers, and seizure vibes to Jenelle that she gives them what we need to see!

Jenelle is doing well and likes having meals delivered to her whenever she wants!  However, I think the environment has her a little off schedule - Jenelle woke up at 4:00 am and did not go back to sleep (despite my best efforts at playing music, playing her audio book and singing) until 10:30 am.  Mommy is very tired to say the least! We're going to try to keep her awake tonight a little longer than normal to help with sleep deprivation (and hopefully that will bring on seizures!)

The other good news from Dr. Tran was that her MRI was normal.  In fact, according to the doctor, her brain is "very normal and healthy!"  Doesn't it just make you wonder what is going on in that pretty head!

So, day two is almost to a close.  Again, please send us all your unwanted seizures!  We can use them!  I'll keep you posted!

1 comment:

celia said...

Her brain is very normal and healthy. Then why can't she communicate ? Why is her vision so bad and a million other questions? I am so completely confused.