As I posted on fb, the date for Caleigh's VNS surgery has been changed to May 5th. This would be because her overwhelmed and slightly fatigued mother wasn't thinking last Monday. We scheduled the surgery for two days before her dance recital. Let's just say that she was less than pleased when we made the discovery. She has worked really hard since September learning these dances. Keep in mind, when you are having seizures every two minutes, learning/memorizing two fairly complicated jazz dances is not easy. Have I mentioned the girl is a master at compensating? Also, we have paid for two costumes and two pairs of jazz shoes. And if you haven't priced them lately, we could pay rent on a decent sized house for a month. Okay, not in today's economy, but the things are stinkin' expensive. So I called the surgeon's office--I found the number RIGHT under the statement "PLEASE DO NOT CANCEL YOUR CHILD'S SURGERY FOR ANY REASON ONCE WE HAVE SCHEDULED IT". Yeah, I know...although I wondered why they gave me the number if they didn't expect a call. She didn't yell at me or anything and we are on the list for 5/5/11. What a Cinco de Mayo celebration!
I know a lot of people have never heard of VNS and some would like to know more. So, I borrowed a picture and I'll use my own "Mom Speak" to try to tell you a little bit. Basically, VNS is a sort of pacemaker for the brain. This is NOT brain surgery, however. The vagus nerve conveniently passes by the carotid artery in the neck on it's path through the body. She will have an incision in her neck where the leads will be wrapped around the nerve, and one in her chest where the generator is placed. Her surgeon is actually "dance costume/prom dress/wedding dress" savvy and said for girls he likes to make the chest incision under the arm. Nice, huh? About a week after surgery the stimulator will be turned on and then for six weeks or so we will be beating a path to SA to visit with our neurologist there for programming. The stimulator will be set to do its thing every 30 seconds to 5 minutes, depending on her response. The vagus nerve acts as sort of a "natural electrode" and stimulates her brain to straighten up and is supposed to reduce the number of seizures. She will also have a magnet that she/us/school nurse etc. can use to "jumpstart" things if needed. It looks like a watch--it is worn on the wrist and is swiped across her generator in the chest as needed for an extra boost. The surgery is 1-2 hours long and requires general anesthesia. She will still be on her seizure meds indefinitely. Boo. I know. But it takes a while to see how she will do with VNS. She will be released from the hospital same day if all goes well, though because of past anesthesia stuff (she painted the inside of my car pink after her tonsillectomy), we will be staying in Houston that night. The surgeon thought it best that we stay in the area anyway since we don't live close by. You can read as much as you want by searching VNS. If you were so inclined, you would see quickly why I am limiting what I read. There is always something. I researched this quite a bit last summer, and we feel confident in the decision as I said before. But you can scare yourself silly. I'd rather pray without ceasing. So that's it! Thanks for reading--I am open to any questions. I've probably heard them before, but I don't mind.
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