School

You know, it kind of sucks when you’re so dependent on someone else. James is 100% dependent on others to provide his feedings, change his diaper, give him his medications, etc. That’s why he has a one-on-one nurse at school. But if there isn’t a nurse, he can’t go to school. The nurse he had at the end of last school year decided that she wanted to take a break for the summer. That’s understandable. Unfortunately, the school district was unable to find a replacement, so James was unable to attend summer school, aka Extended School Year (ESY).

James started this school year with a new nurse, but she only lasted a week. It started out with her being sick and she’d probably be out for a week. Stacy had a good chuckle about this. She was only with James for about a week before she got “sick”, but during that time she gave Stacy a bunch of ideas of things we should be doing to boost James’ immune system. Ironic, isn’t it? Tell us all of these ways that we can build up his immune system to lessen his chance of getting sick, and then getting sick yourself.

Two days after she got “sick” we were notified that she had a herniated disc in her back and probably would not be back for the foreseeable future.  I am not sure if I believe that or not. We’ve had several nurses in the past that were only with James for a short time before they up and quit. Some of them just stopped showing up.

We understand that James can be a lot to deal with. We know that it takes a special person to take care of someone with such complex needs. If you can’t handle everything that is required to take care of him, then just tell us that. We will understand. Don’t just not show up. How would you feel if you were depending on someone, and they didn’t show up? And don’t feel like you need to make up excuses as to why you can’t take care of him. James is a lot to handle. We know. Sometimes Stacy and I can’t handle it either. I’m thankful we have each other for that reason. If Stacy gets tired and frustrated, she “taps out” and I step in and take over.

After the nurse got “sick” and subsequently got a herniated disk, the nursing agency that the school uses immediately started looking for a replacement and found one. She had to put in her two-week notice at her prior job, but as of last week, James is back at school. Fingers crossed that this one works out and sticks around.

VNS Replacement

While James was at the hospital in December for a routine video EEG (VEEG), the neurologist looked at the status of his VNS (vagal nerve stimulator) and saw that the remaining battery life was somewhere in the 11- to 25% range. We had discussed our options: either turn it off to see how his seizures were without it or start planning for a surgery to replace it.

For those of you who are new here, a VNS, or vagus nerve stimulator, is a small device that is surgically implanted in the chest and sends electrical impulses to the brain through the vagus nerve in the neck. This video is a bit on cheesy side, but it does a really good job of explaining what a VNS is and how it works:

We had the neurologist turn it off at the end of March and he seemed to do fine without it for a while, but then he started to get a bit more twitchy than normal. We weren’t sure if this was seizure related or not but decided to move forward with getting the VNS replaced.

We met with the surgeon towards the end of August, had a pre-operative meeting with our pediatrician a week later, and had the VNS replaced on September 7th. It was a really quick surgery. They took him back, put him under anesthesia, removed the old VNS, put the new one in, sewed him back up, and wheeled him over to recovery in less than 45 minutes. The original VNS surgery was a bit longer because they also had to insert the wire in his neck. With the replacement, they just replace the VNS device and reuse the wire that was originally put in.

In pre-op, waiting for the surgeon to stop by to go over the surgery before they take him back:

The surgeon marked the scar from the previous surgery so that he could see it better in the operating room. He was going to open James up in the same spot instead of creating a new scar.

After the surgery, James spent about an hour in recovery:

Then it was off to home:

I wish all of his surgeries would be that quick. I should note that there was a lot of waiting before and after the surgery. The surgery itself may have only been 45 minutes, but we had to be at the hospital two hours before surgery, and then spent an hour in recovery. So I guess that 45-minute surgery really took almost 4 hours from the time we arrived at the hospital to the time we went home.

As with the previous VNS replacement, they have not turned it on yet. They like to let the incision heal for a couple of weeks first. James has an appointment this week with the neurologist to have it turned on and the parameters set to match the previous VNS. This is done with a special “wand” that is held over James’ chest where the VNS is. You can see this in the VNS video above when Jack goes back to see Dr. Kidd after the surgery.

Random Stuff

James received a few more birthday cards a couple of days after his birthday. This one especially caught my attention. I’m not sure how this passed inspection or quality control. Take a look at it and see if you can spot the error:

Did you see it? On the inside of the card, it says “Your a teenager now!” It should say “You’re a teenager now!” You’re, as in you are a teenager now. Not your, which is a possessive adjective. You use it in front of something that you have or that you own. For example, your house, your car, or your friend. Sorry for the quick English lesson. This just bothered me. You would think a card company would be better with the grammar that goes into their cards.

Moving on, Maggie celebrated her birthday a couple of weeks ago. At least we think it was her birthday. The rescue that we got her from was only able to estimate her age and birthday. They thought she was about 5- or 6-years-old when we got her two years ago, so she should be either 7 or 8 now. For her birthday she made pupcakes with Stacy to share with her “boyfriends”. That’s what we call the dogs that live behind us. Multiple times a day they have snack time with Maggie at the fence and they occasionally have play dates either at their house or ours. We joke that we need to somehow put a gate into the fence, so we don’t have to walk all the way around the block to go to each other’s house.

And for the final random thing before I end this post, this is one of James’ new shirts he got for this birthday:

I am still determined to get James (and me) a Mustang someday. Not one from the ‘60s like the one on his shirt, but one from the late ‘80s or early ‘90s. I have this crazy dream about buying a 1991 or 1992 Mustang GT hatchback in relatively decent shape that he and I can work on together, and go cruising around in. Something like this:

Of course, we would need to figure out a seating system for James…something to keep him safe and secure. Preferably something that would also make it easier for us to get him in and out.

First things first, though. We need to focus on replacing our van first. It’s still hanging in there, but it is starting to have some issues. Nothing serious yet, but I don’t want to get caught with a major issue that’s going to cost a lot of money to fix. With the current cost of wheelchair accessible vans–$70,000 to $100,000, I have no idea how we’re going to be able to afford one.

We’ve looked at used ones, but with the way the used car market is right now, even those are expensive. I came across one for around $50,000, but it already had over 60,000 miles on it. It’s crazy how expensive these vans have become. To put this into perspective, we paid just over $50,000 in 2014 for a brand new Dodge Grand Caravan that was made wheelchair accessible by BraunAbility. That was the out-the-door price with all taxes, fees and extended warranty included. We’re hoping to get a decent amount for it when we trade it in, because we’re going to need it. We are trying to figure out where the rest of the money is going to come from, but don’t be surprised if you see us having another fundraiser. I really don’t know of any other way to legally come up with $70- or $80,000 for a new(er) van.