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James went in for surgery on Monday morning to have a VNS (vagus nerve stimulator) implanted. The surgery itself was a success, but as with any surgery, the recovery can be a bit rough. And for James, it was a rough week.
I’ve been trying to figure out how I wanted to write this post. Should I do a play-by-play from our and James’ point of view? Or should I do a more detailed post that discusses what exactly the VNS is? I think I’m leaning more towards a combination of the two. I’ll start by going over what the VNS is and what we hope it will accomplish, and then discuss what our experience was like with the surgery for those that may be considering having the VNS implanted either in themselves or in a loved one.
What is a VNS?
VNS is short for Vagus Nerve Stimulator. It is a small device that is implanted in left side of the chest. There is a wire connected to the VNS that travels up into the neck and is wrapped around the vagus nerve, which runs between the brain all the way down to the large intestine. The VNS sends electrical impulses through the wire, to the vagus nerve, and then travels to the brain.
What is a VNS used for?
A VNS can be used as a treatment option for seizures that have not been controlled by antiseizure medications, and where surgery is not possible.
James has been battling epilepsy and seizures for his entire life. They believe, but are not positive, that James had a seizure when he was in the NICU. When he was around four months old, he started having this “quirk” that we couldn’t figure out. He would randomly throw his arms up and his head would turn from right to left. After discussing it with a couple of doctors, they thought it might have been acid reflux or digestive issue and directed us to a GI doctor. Long story short, those quirks had nothing to do with GI.
After two months of trying to figure out what those quirks were, we finally got a diagnosis. They were infantile spasms (IS), which is a type of epilepsy in babies. We tried ACTH and Sabril, which are supposed to be the top treatments for infantile spasms. Neither one of those worked. We tried various other antiseizure medications, and combinations of medications. He was still having frequent seizures.
We even tried the ketogenic diet, which has been shown to reduce and sometimes eliminate seizures. Towards the beginning of the diet, he did seem to be having less seizures, but that was short-lived, and they came back. He lost a lot of weight on the diet and got to the point that we started to get concerned and decided to pull him off of it.
James has had video EEGs (VEEGs), an MRI, and a MEG scan to see if brain surgery might be an option. Unfortunately, the scans showed that the seizures were coming from multiple parts of the brain, so surgery would not be an option to eliminate the seizures.
We reached the point where the VNS was the next logical step. We’ve been praying and keeping our fingers crossed for months that this is the thing that finally cures him of these awful seizures.
Here are a couple of informative videos about the VNS:
Our Experience with the Surgery
Now that you know a little bit about James’ history with epilepsy and have some information about what a VNS is, lets dive into James’ surgery and his recovery. As I mentioned in the beginning of this post, James went in for surgery on Monday, September 24th. He was wheeled back to surgery at around noon and the surgery was supposed to last 45 to 60 minutes.
We went to grab a quick lunch, stopped by the gift shop and bought a red monkey, and rushed back down to the waiting area so we were there when James was out of surgery. We didn’t get the call that he was out of surgery until about 2 pm. We were thinking that a 60-minute surgery would mean that he would be out of surgery around 1 pm. By 1:30, we started nervously pacing and wondering if something went wrong. Fortunately, the surgeon came out to talk with us and said everything went fine and that a nurse would be out shortly to take us back to see him in recovery.
After about an hour or so in recovery James was cleared to go home. We live close to the hospital and were home by 4:30. Here’s James at home rockin’ the shirt he got from 7th Heaven Band this summer.
You may notice the large bandage on his neck in the above picture. That’s where the surgeon went in to wrap the VNS wire around the vagus nerve. Below is a picture to show where the VNS was inserted in his chest, and a better picture of where the wire is in his neck.
Now we’re onto the bumpy part of recovery. Because James can’t swallow and can’t clear his secretions like most people can, he normally sleeps on his belly so that gravity pulls the secretions out of his nose and mouth while he sleeps. Because the VNS was installed in his chest, he couldn’t sleep on his belly after surgery because it would put pressure on the surgery site and cause pain and discomfort. We tried propping him up so that he could sleep on his side, but that put pressure on his arm, which caused him to lose circulation in that arm, and his arm started turning blue. So, we alternated from side to back throughout the night. We didn’t want to just leave him on his back all night because his inability to clear his secretions could cause him to aspirate on them and lead to pneumonia.
He made it through the first night okay. I guess it was as good as we could have expected. He had several seizures, probably due to pain and discomfort. This would probably be a good time to point out that even though he the VNS is in, it is not turned on yet. They want him to be fully recovered before they turn it on. As you can probably imagine, it is probably going to feel a bit uncomfortable and feel weird when it’s first turned on and starts sending tiny jolts of electricity up your neck and into your brain. Let’s get him over the pain and discomfort of the surgery first, then we’ll introduce a different kind of discomfort.
Tuesday he did a fair amount of twitching and crying. We assumed that this was just because of pain and/or discomfort from the surgery. All we could do was keep him as comfortable as possible and keep up with the pain meds.
On Wednesday Stacy noticed that he hadn’t peed in a while, so she gave him a little bladder massage which usually gets him to pee. She noticed that his abdomen was warm so we started to check his temperature every so often to make sure he wasn’t spiking a fever, which could be an indication of an infection from the surgery. I think Wednesday is the day where we started to notice that he was feeling better. Stacy put him on his belly for a little bit to see if he would tolerate it, and he seemed to handle it okay.
Saturday we thought he was completely recovered and back to his normal self, but today (Sunday) he took a step back and was a bit stuffy. We’re not sure if this is related to the surgery, or if something else is going on. Maybe he’s teething? We were supposed to go to Stacy’s parents tonight to celebrate Stacy’s birthday, but we weren’t sure if we should take James out if he wasn’t feeling well. Stacy went to dinner without us. The boys stayed home and watched some TV.
This past week has been a bit rough, and we just hope the surgery was worth it. We really won’t know if it was until we get the VNS turned on and see if it works. God I hope so! I think this is our last option. If this doesn’t work, then are we just going to have to watch James have seizures for the rest of his life? I don’t think I could live with that. I can’t accept that. I know I ask you to pray often, but this is one time I need you to pray extra hard.
