Wednesday, December 9, 2009

What would "worse" look like?

Our endocrinologist, Dr. Bekx stopped by yesterday to check in with us.  During her visiting Ellie went into a seizure while she was hooked up to an EEG machine.  The EEG tech was most excited as rarely is he able to actually capture a seizure happening on the EEG.  When she started going into the seizure, her respiration rate started to fall (she shouldn't fall below 90 and it was quickly plummeting from the 90s to the 60s to the 40s!!)  I went into full panic mode, hit the nurse's call button and no one responded.  I ran out into the hallway yelling, "She's having a seizure!!!"  (If I don't panic, who will, we are after all in a hospital.)  As Dr. Bekx cooly and calmly said, "Let's get some oxygen hooked up for her.  Several nurses ran into the room to help with the set-up, Ellie started to come back around. 

For the rest of the day she was never quite back to being able to speak or sit up or move around much.  She pretty much laid in bed.  I could tell she really really wanted to speak and the strange thing is when she can't speak, suddenly the words she wants to say "jump" into my head so I can speak for her.  It reminds me of how the Aboriginal people are able to speak to each other by reading one another's minds.  Or maybe it's just because I know her so well and know what she likes to talk about.  (I think the first description is more magical, though).  Either way, it's a helpful skill to have in these situation for sure.   

Last night we became concerned because Ellie really hadn't bounced back from her seizure.  The neuro resident came by to check on Ellie and he felt confident that she was reacting sluggishly because of the anti-seizure meds we had administered.   When he suggested we contact him if Ellie got worse, Thom asked what exactly would getting worse look like?  She was lying in bed drooling, not able to speak, barely moving.  Her oxygen levels had started to drop so we'd put her back on oxygen.  Then throughout the night her respiration rate kept dropping causing the alarm to continually go off. 

In the morning, an MRI revealed that only part of her brain was being drained by the shunt.  Ellie was rushed into surgery and she will either have the shunt relocated (again) or have a "Y" shaped shunt placed.  Either way it seems like it has to get better than it was yesterday.  (This is where you respond, "Oh yeah, definitely gotta get better.")

2 comments:

  1. For you medical sticklers out there it was her O2 level that fell below 90 not her RR since one at 90 would be quite alarming (that should sit below 30 for those non-medicals). Also it was her RR that was going up this morning.

    And what they did today was to connect the original shunt to the drain tube so that now both are draining and neither are "just decorative".

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  2. "Oh yeah, definitely gotta get better."

    A "Y" shunt sounds like just the trick. Why didn't they just do that before? (I'm thinking that if you go into precious Ellie's brain, put in the best shunt you got.) I know it's not all that simple.

    Oh, and I see Thom's explanation. I don't how you all track all this. I SO wish you didn't have to.

    My love and prayers and thoughts are with you. Please let us know how she is doing.
    Amy

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