Friday, May 17, 2013

And Now We Wait...

Saturday, December 3, 2011

We've been home from the hospital since yesterday afternoon.  Getting all the electrodes and superglue off Eliah's head was just as traumatic as getting them all on.  He was exhausted from being up all night (me too), and every time he fell asleep in the morning, they wanted me to wake him back up.  It made it so much more difficult.  But, once home, he slept peacefully in my arms.  I napped sitting up, since he wasn't going to let me put him down.

The Neurologist called last night to tell me that he caught one staring seizure on the EEG, but that he wanted to review the full 24 hours and call me either today or Monday to discuss.  And since Kelley has the kids this weekend, I slept peacefully last night.  Well, I basically passed out from mental and physical exhaustion. 

When I awoke this morning, I saw an email from Kelley.  Eliah had another big seizure just a half hour ago, where Eliah stopped breathing and turned blue.  Kelley had to breathe for him.  They seem to be so frequent now.

Eliah has now adopted three types of seizures.  The old kind, where he turns his eyes to the side, his mouth quivers and he stops breathing.  The new kind, where his eyes dilate, pop straight out, his body gets completely stiff, and he stops breathing (like in Total Recall, when Arnold's helmet comes off and there's no oxygen).  And lastly, the kind where he stares to the side and holds his breath. 

All of them are scary.  And the Neurologist was telling me on Tuesday that on his short EEG, the abnormal activity wasn't in the Temporal Lobe like it used to be.  It's now in both Occipital Lobes.  What does that mean?  Well, it means it is affecting the visual part of the brain.  It's likely that when he has a seizure, he sees visions, hallucinations, weird colors and shapes.  It's all probably very scary for him.  And there's about a million possibilities of what could be causing activity in that part of the brain.  Some of those possibilities have cures, some don't. 

We don't currently know what's going on with Eman.  We don't even know if the 24 hour EEG will tell us anything.  All we know right now is that he is getting worse.  We just have to wait and see what the doctor says and what his next step is going to be.   In the meantime, we give our little man lots and lots of love.....and oxygen.

UPDATE:  Eliah just had seizure number two this morning. 

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