VNS Replacement

As I mentioned in my last post, while James was down at Rush Hospital on February 20th and 21st for an overnight VEEG, the neurologist scanned his VNS and noticed that the battery was almost dead. The VNS does not have a replaceable battery; the whole device needs to be replaced. I guess this makes sense since it is implanted in his chest so replacing a battery (if that was an option) would require surgery to remove the VNS from his chest. Might as well replace the entire thing with new hardware.

The surgeon who did the previous VNS surgery in 2012 had an opening on March 1st, so we took it. The only problem was that he was going to be at a hospital that we had never been to before and Stacy was a bit nervous because she didn’t know the lay of the land. You see, James has become what Stacy calls a frequent flier at our local hospital, so Stacy knows the ins and outs of the hospital, and the nursing staff. Being some place new, she didn’t know what to expect.

I don’t know what happened, but something got really goofed up somewhere. James’ surgery was originally scheduled for 3:45 pm at the new-to-us hospital. Then it was changed to 5:45 pm at our usual hospital. Then it was changed again to 1:00 pm at our usual hospital. We found out about that last change the morning of the day of surgery. How messed up is that? As if we weren’t already frazzled as it was that James was going in for surgery. We showed up at our hospital at around 11:30 am almost expecting them to say something like, “oh, I’m sorry, but we don’t have him on the schedule for surgery.” Fortunately, he was.

I realize that some of you may be new here and may not know what a VNS is, so before I discuss the surgery, here is a short 5-minute video that discusses what a VNS is and how it works:

Now that you’ve learned a bit more about the VNS, let’s talk about James’ surgery. Here he is all prepped for surgery. With all of the screwups with the scheduling, Stacy thought she would be funny and put a post it on his chest so that they knew what he was there for.

The wheeled him off to surgery at around 1:30 and we got the call that he was done at around 2:45. Real quick surgery. I can’t remember how long the surgery took when he first had the VNS put in, but I think the replacement went much quicker because they just needed to replace the VNS device, and just reuse the existing leads that attach to the vagus nerve. After an hour or so in recovery, he was cleared to go home.

Because James sleeps on his belly at night, Stacy made him a little donut that he could lay on while sleeping and hopefully take some pressure off the surgery site. We don’t know if it helped or not because he can’t tell us how he feels, but we’d like to think it did.

Here’s a pic from Wednesday, a week after surgery. It looks like it’s healing nicely. The VNS device is placed in the chest. If you look at his neck in the picture below, you can see a discolored white line. That’s the scar from when the VNS wires were attached to the vagus nerve during his first VNS surgery in 2012.

The surgery itself was quick and easy. There is one thing that Stacy and I failed to remember, however. For whatever reason, after James has a surgery, no matter what type of surgery it is, his digestive system seems to shut down. We can’t feed him his regular feeds at the regular rate. His body won’t digest it. It just sits in his belly, then when we give him his next feed, that sits in his belly, too. His stomach eventually becomes distended from all that food just sitting there and we need to use a syringe attached to his g-tube to drain his stomach. We need to remember to switch to a liquid Pedialyte diet for a couple of days after surgery and then slowly reintroduce his regular formula.

Cerebral Palsy Awareness Month

I should have mentioned this in my last post, but March is Cerebral Palsy Awareness Month. Now that the month is almost half over, it seems a bit late to bring it up, doesn’t it. Better late than never?

Here is a good video from the Gillette Children’s Hospital that explains what cerebral palsy is:

Stacy has been posting daily CP facts on James’ Facebook page and I will be posting those here as well. I plan to post days 1 through 15 sometime next weekend, and then days 16 through 31 on ??? The question marks are because I am questioning when I am going to post days 16 through 31. They should be posted in March because it is CP Awareness Month, but the 31st is a Friday. I will see if I can get it posted Friday night. If not, I’ll aim for April 1st.

I know this is really late notice, but Stacy is having an online 31 fundraiser. A portion of her sales commissions will be donated to the United Cerebral Palsy Center for Disability Services. If you would like more information, head over to Stacy’s 31 Facebook group. Hurry, though. The fundraiser ends on the 15th, which is only a couple of days away.