03/26/2026
Today Tyler and I took C**t to an appointment at the University of Iowa to see his neurosurgeon. C will be having surgery to remove the VNS device from his chest, and the wires that go up his neck and connect to his vegus nerve. I always assumed it would be a simple surgery (placing the VNS was an easier surgery), but learned today that taking out the wires is a lot scarier and riskier than what I had originally thought. He will have to stay in the hospital in Iowa City after surgery, but if all goes well, he would get to go home the next day. We are removing his device, because it has never done anything to help his seizures, and makes it more difficult when C**t needs an MRI (Mercy will not do MRI’s on C**t with a VNS, so he has to be transferred two hours away to Iowa City.) This isn’t a big deal if it’s a scheduled MRI, but we have had a couple of emergency type situations where he had to be transferred by ambulance, and then admitted in Iowa City just so he could get an MRI.
After we discussed the VNS surgery, we discussed another brain surgery… this would be C**t’s third brain surgery (2020 and 2022 were his previous surgeries) As we learn more, I will write about the brain surgery in the future. This surgery would not cure C**t, but hopefully help improve his quality of life… our biggest hurdle will be (surprise surprise) insurance… insurance will literally be the death of me one day. 😤 Right now his insurance company absolutely will not cover the surgery, they will not even take a doctor’s appeal into consideration, it’s an instant no… so his doctor will not even submit anything to try and get it approved. C**t’s neurosurgeon and Epileptologist (neurologist that specializes in Epilepsy) have been fighting this particular insurance company to cover this brain surgery for children for a while now… his neurosurgeon thinks they will be close to getting them to consider approving it for some of their most severe cases in the next 2-3 months… but until that happens, we just wait. It’s so incredibly frustrating to know there is a brain surgery that could potentially give C**t a better quality of life… a surgery that other insurance companies have covered for children like C**t (over the years, C**t’s surgeon has done this surgery on 15 other kids), but C’s insurance company is denying it to children who have no other option… The doctor told us this surgery is literally a very last treatment option for children with the most severe types of generalized Epilepsy… what a gut punch, I literally hate the people that make these medical decisions without ever even living or experiencing what it is like to have a medical condition that you greatly suffer from every single day of your life.
Anyway… I could go on and on and on, please keep my guy in your prayers, I know I’ll be praying not only for C**t, but for there to be some type of breakthrough with his insurance company, a breakthrough where they will suddenly decide that giving a child with no other treatment option the chance to have a little better quality of life is something worth approving. 🙏
📸 pics of C**t today getting an xray of his chest, so they could look at his device. If you look at the xray, you can see his VNS on one side of his chest, and his port on the other side.
