Friday, May 17, 2013

A Quick Update from Kelley

October 2007

It's been a very restless night.  When Eliah stopped breathing last night, he was in the middle of a seizure.  His head turned hard to the side, which we think caused pain because he was bumping up against his new port.  That made him cry out... the kind where he opens his mouth in a silent scream, and also holds his breath for a few seconds.  Except he didn't take a breath in.  That was the blue episode, in which about 20 people filled the room after some frantic screams down the hall.  Doctors and nurses from our floor as well as the floor below all managed to make it to our little room.  They had to put the breathing bag on him to get him going again.

Since then, he's been having little "non breathing" episodes about once an hour.  He's trying to sleep, but once he gets to sleep it's as if he either forgets or gets too lazy to breathe.  He gets down to about 1 or 2 breaths a minute, at which point an alarm goes off and we shake him gently.  The machine detects his breathing rate pretty quickly, so he's actually only at this rate for about 10-15 seconds maybe, before we jump up and remind him to please breathe.  It's more like sleep apnea than anything, as far as we can tell and going from what we hear nurses/doctors say.

Other than that, he just got hooked up to another EEG, and the tech said he was seizing from the moment he turned it on.  He's calling the neurologist now.

It's a waiting game.  One that nobody likes to play.

Ann will send a better update when she gets a chance.

- Kelley

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