Did Hell Freeze Over?
Hello friends. I feel like it’s been a while since my last post. Although February is a short month, it felt longer than normal. Maybe it’s just me, or maybe I’m just at the point where I am done with winter and am ready for spring. This winter has been brutal. I’ve lived in Chicago my entire life and I don’t remember ever experiencing temperatures as cold as we’ve had this year.
In my January 28th post, I included this picture of James all bundled up for school and the weather on January 25th:
Well, the following week it got worse! We had a brief warm up on the 28th before the temperatures plummeted again. On the 30th we had a high temperature of -15 degrees. Negative 15! Throw in the wind chill and we were dealing with temperatures of almost 50 below zero!
It was so cold they closed school for most of the week. They originally just closed on that Wednesday and Thursday, which were the coldest days, but ended up closing that Friday as well because there were several school buses that wouldn’t start. If I had been sitting out in that cold for two days, I wouldn’t want to start either!
Spinal Fusion, Take 2
Last summer we were planning to get James a full spinal fusion to fix the major curve in his back from his scoliosis with the hope that it would take pressure off his lungs. Surgery was scheduled for July 25th, but our insurance company denied coverage for the surgery a week before the scheduled surgery date. Their reasoning was that the curvature of his spine wasn’t, and I quote, “severe enough to meet criteria for this procedure.” The curvature of his spine was 59 degrees but needed to be 70 degrees in order for them to cover it.
We’re not sure if James heard the number he had to hit in order to get the surgery or if it just happened, but he blew by that 70-degree mark. We saw the spinal doc in early February and his curve is now at 80 degrees without his TLSO, and 74 degrees with it. Either way, he has met their criteria so we don’t think they will be denying us now! We’re planning to do the surgery sometime in May. We don’t know the exact date yet.
Here he is getting some x-rays of his spine. Look how tall he’s gotten. His feet almost touch the floor.
If you steal stuff from something from a blog post you wrote, it’s not plagiarism, right? In a post I wrote on 07/03/2018 when I was discussing the upcoming spinal surgery, I said that “James has had many surgeries in his short life—and rocked them all—but this one will be the longest by far. The doc is estimating six to eight hours!” It’s going to be a long surgery. Stacy and I have been kind of nervous wrecks over here, but we’re trying not to think about it. She’s been working on ideas for his 10th birthday to take her mind off the surgery. She has a couple of ideas for themes…either Zero the Hero, or donuts. We’ve done a superhero theme before so she’s leaning towards the donut theme. No idea what that’s going to look like, but that’s her project to work on. Whatever she comes up with, I know it will be awesome. They always are!
Health
For the most part, James has been doing a good job at keeping healthy. We’ve actually been a bit surprised that we didn’t have to make a run to the emergency room with that brutally cold weather we had at the end of January. A couple of weeks ago he came home from school with some respiratory issues and on oxygen to keep his sats up. I think it was a Tuesday. He ended up taking the rest of the week off. It was a bit of a roller coaster.
I had forgotten that Stacy took a couple of pics of his pulse ox numbers. So I was wrong. He came home from school on Thursday the 21st with the respiratory issues…not a Tuesday. In the picture below you can see is pulse ox numbers on the 21st when he came home from school, and then 24 hours later. He went from satting at 86 (with oxygen) and a heart rate of 158 to satting at 98 (without oxygen) and a heart rate of 76 in 24 hours.
That second set of numbers are the numbers we like to see. We’d actually be okay if he was satting at 98 with a little bit of oxygen. Having numbers that good without needing oxygen, we thought he was over whatever was causing the issue. We really should know better by now. Right around midnight that night his pulse ox alarm went off because his sats dropped again. Stacy was up with him for a few hours with suctioning, watching his numbers come back up, to desating again, more suctioning, numbers came back up, desating… She ended up putting him on a little bit of oxygen, and he made it through the night without any more issues.
That was Saturday morning. Stacy was in and out most of the day walking dogs, so I was on James duty. We went back and forth a little bit with the oxygen, but I think he was off oxygen more than he was on it. We put him on a little bit of oxygen when we put him to bed Saturday night and that seemed to do the trick. He made it through the night without desatting. Sunday he was pretty much back to normal and ready to go back to school on Monday.
Cerebral Palsy Awareness
If you’ve been following James for a while, you probably know that March is Cerebral Palsy Awareness Month. Stacy got an early start and started posting daily CP facts on James’ Facebook page on the 28th. I won’t post those facts here on a daily basis, but I will plan to post two collections of those posts. Looking at the calendar, I think I will post days 1 through 16 on Sunday the 17th, and then days 17 through 31 on Sunday the 31st.
In addition to the daily facts that Stacy will be posting on James’ Facebook page, she is also having her annual Thirty-One fundraiser to raise money for the United Cerebral Palsy Association of Greater Chicago.
Valentine’s Day
I couldn’t figure out where to fit this into the post, so I guess I’ll put it at the end. I don’t know why there is a dinosaur on a shirt that says, “Heart Throb”. I mean, who thought that was a good idea?
