without a net

Since she got sick almost 12 years ago Suzie has had seizures.

Sometimes she has runs of big,nasty greasy seizures, other times it
is little more than an inconvenience. Like "oh look…Suzie just dropped her pencil had a seizure. That sort of incidental seizure.

Which really sounds funny. But we have been round and round with
these things for years, and so I guess you can get a bit blase about
the whole thing.

Especially since the implant.

A bunch of years ago, maybe six or seven, Suzie had a vagal nerve
stimulator implanted. Somehow, and the doctors are really not sure how.
And in some cases, and the doctors are really not sure why in some
people more than others, the vagal nerve stimulator tricks the brain
into thinking that it just had a seizure so that "hey no reason to have
a seizure here…nothing to see…just move along."

And for Suzie it has worked like a champ for the past six or seven
years. She still takes a fistful of medicine twice a day, but the vagal
nerve stimulator seems to have done some pretty cool things.

You can tell when the thing is working because every few minutes,
when it fires off and does its brain-tricking-thing,it cause her voice
to flutter. Like she is talking into a fan. Very cool stuff cause it is
a sign that this little wonder is doing its job.

But recently the every-three-minute-fluttering seems to have
stopped. Seems that vagal nerve stimulator's have batteries that
eventually give out. We knew this from the start so we will need to go
back to the doctor for an official test - hook her up the the VNS
battery tester and find out for sure.  And we all know that dead
batteries are not a big deal - you just pop open the flashlight or Game
boy and change out the batteries.

Except in this case, the Gameboy is buried in her chest cavity.

So we got some figuring to do – all the while walking the seizure
high wire with no electronic brain-tricking-thingy do its little
flutter dance in her chest.

Which is frankly giving me a little flutter dance in my chest…


Posted on June 2, 2009, in Dad stuff. Bookmark the permalink. 1 Comment.

  1. Jeff, I read this yesterday… a little behind on reading blogs and wanted to tell you I am praying for you family espceially your sweet girl. I met with Mrs.Jo this morning and she is praying for her as well.I would love an update when you get a chance.

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