Surgery is not going as planned and Bai could use a little extra prayers this morning.
The other girls and I are in the waiting room, and the nurse is making her rounds. Every family is quiet and patiently waiting for their family member to get done. We know this wait. We are too well versed.
The nurse passed by about 20 mins ago in our area with the news you never want to hear…things are not going as expected. Bailynn’s VNS was originally placed in 2003. It was then replaced in 2011, but the wiring was not. By wiring, there is a wire that connects the VNS to her vagal nerve in her neck. The wire has caused significant damage inside of Bai. The wiring is cracked and fraying. There is a lot of scar tissue. The surgery is going to take more time than expected. They are struggling to get the old hardware out, something that should have been quick. The VNS may not be able to be replaced by a new machine. We have had issues with the VNS connectivity during diagnostics. We have suspected it was causing issues in the past, but diagnostics have always came back fine. We now know why. My heart hurts.
Here we sit. Now waiting for what happens next. I have given the nurse a message to return to Bai’s surgeon, “Do what is best for Bai. If the VNS can’t go back, then that is what is meant to be.” My heart breaks though. This little machine is the only defense she has against seizures. Bob and I made the decision to remove anti-seizure meds from Bailynn’s daily routine years ago. We don’t want them back. They steal a piece of Bailynn away. They cause other health issues. They do damage more than good.
I will know in the next few hours what happens now. I will keep everyone up-to-date as I have new info.
Bailynn, can she just be easy? I think not.