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...

Comments

[Susan]

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.