Spinal Fusion | 20 Years Later

Hello!

In the last several years a lot has happened, I celebrated 10 years as a blogger in 2019, I hit two milestones in last year, starting with my blog turning 10 in October and I entered my “dirty thirties” a month later. For this year, there is a very different anniversary, and I’ve felt weird about it for months. I actually decided to allow myself to write about my thoughts months in advance because I couldn’t get it out of my mind of how it’s been this long since it happened, so I hope you enjoy taking a trip down memory lane today.

I was technically born with three conditions, as you may know I have Arthrogryposis Multiplex Congentia, but this can lead to other problems like babies born with club feet. scoliosis, etc. I happen to have a serve case of AMC with the addition of a club foot, rocker bottom, and scoliosis. I’ve had many, many physical therapies over the years, in the hopes of trying to help make life a little easier. I’ve had discussions about what could be done as far as surgeries go to “fix” my arms and feet, but the only I ever had been the full spinal fusion surgeries in 2002.

Photo by cottonbro on Pexels.com

What is spinal fusion?

Spinal fusion surgery is usually the last option, if your back cannot be corrected after wearing braces for multiple years. The National Spine Health Foundations says, it is like trying to fix a broken bone(s), which is a great way on how to explain it, especially in my experience. What does one do in the hopes of repairing a deformed bone? You have two options: use a splint or form a brace/cast and hope time will heal all wounds… Nice pun action there, right?

I wasn’t a stranger to braces; we still have the itty-bitty braces doctors gave us for my hands. When I came out of the womb, my arms weren’t set in the position at my chest. According to my mother, they were somewhat flat, and the doctors tried to adjust them twice. The first was when I was in incubator, (I was a preemie, so I needed a little help breathing and then of course figuring what was going on with my body.) and the nurses made a makeshift log by folding a single wash cloth and propped me on top of it so my arms would stretched out and eventually my parents were given the braces for my forearms and they a little smaller compared to a standard remote for your TV!

Anyways, I was about five or six years when I was put into the first brace I actually remember. I don’t exactly remember the appointment itself but It had many crooks and crannies, plus it was very decorated with stickers, thanks to my fellow classmates adding a bit of fun to the whole thing! I wore it until the end of third grade and just before I turned 10, I was fitted with a brand-new brace and it was very bulky, this was as close to a corset as I could get, and thankfully I only had to wear it for less than a year because it wasn’t doing very much to help me at this point.

I remember the night before we drove up to Shriner’s Hospital in St. Louis, my mom had my sister and I and we prayed together if it was decided by the doctors I would have surgery, I remembered our expressions being of fear and shock, I mean we were kids, despite the fact we’d go over there multiple times a year since I was about two years old, somehow I hadn’t heard that word “surgery” before, so it was no wonder why I can remember that scene so well because it was a new thing to me, and I didn’t fully understand that whole process until much later in life.

The actual appointment is still hilarious to me because after getting X-Rays done five minutes earlier, the four of us were called next and put into the standard size room with a very used chalk board and different toys attached to the wall next to the giant mirror. Our parents were wrecked with nerves, Blondie was playing, and I was on the cold floor slowly peeking out into the hallway, watching everybody walk around, which is something I still do at age 30, but I noticed there were a lot of doctors looking at a set of X-Rays and I saw my doctor among them. I knew at that moment they were inspecting my images and as I was told to scoot back in the room, I didn’t feel scared but curious of the language they were discussing–I knew something big was coming and it fascinated me!

As I made my way back over to my folks, they suspected the doctor would be coming soon, so one of them lifted me onto that damn bed thingy and I sat there for a short time before they came into the room. How do you know you’re going to have surgery? Well, in my case, about 7 doctors walked right in and they were the same 7 people busy talking in low tones about the process of my spine. There were tears and I cracked a couple of jokes, because that’s how I roll in life. The day we went up there for this appointment had to been in mid-April 2002, because by the start of August, and what would be the beginning of my 5th grade school year, we made another trip which would be even longer as I was now an inpatient on the second, B floor with a roommate by the name of Shelby.

My mom and I tend to argue about the exact date we went up and stayed at the hotel and eventually moved into the hospital to stay. The first night in that hospital was another hilarious experience! I couldn’t get to sleep, because the next day would start on my three-and-half-month journey. We got yelled at by one of the night nurses that the TV wasn’t allowed on at night. This is definitely something you don’t tell a new patient, but we followed the rules, and after my mom went to bed, I decided to play with the controls of my bed, and I had that thing folded up like a taco! I think my mom woke up in the middle of my fun and told me off, because I don’t remember much after that!

The next day, Dr. Lawrence Lenke only came to the hospital on Tuesdays and Thursdays as he spent the majority of the time at the Children’s Hospital a few miles into the city, where I would end going for the second and third surgeries. The first was a smaller one but the one we can somewhat pinpoint the easiest, which is why I tend to celebrate them on this one date, as supposed to the day we left in early November. This surgery was just as important as the doctor and his nurses and techs fitted a half halo made of metal onto my skull. I had eight pins screwed into sections to keep it secured and I was attached to a pole in both my bed and wheelchair to keep myself alignment. I ended up having three surgeries altogether, but I wouldn’t have the actual spinal fusion surgery six days after my 11th birthday.

Over the years, I’ve finally figured out the timeline of everything that happened, both while I was in surgery and recovery, and what was going on at home and school too. My mom and I were separated from our support systems. My dad stayed home to work and stay with my younger sister, she actually doesn’t have a lot of memories of that time, whereas I remember almost everything. I had tons of distractions between school, friends that stayed in our section, the goofy nurses and field trips. I went on more field trips in three months than I did in one year!

A little after I had my first surgery, I got to meet some of St. Louis Cardinal baseball players. My dad was very excited, he thoroughly enjoyed this! I think this and the time a group of motorcyclists came to visit us and brought us goodies. Anyways, I’m not into baseball so I sort of felt silly meeting these guys, but the Cardinals team is a big supporter of Shriner’s Hospital, and visit the kids, and sometimes a group of kids, nurses and people in the RT (recreational therapy) go to watch a game and meet the entire team(s) and I am thrilled they do this. We met with a great bunch of guys, and it was really fun, but I highly doubt Woody Williams still has my autograph but hey you never know! He was very curious of my ability to write with my feet, so we did a trade, he signed my shirt, and I gave him my autograph.

From L to R we have Timo Martinez, Andy Benes (he retired later in the 2002 season!), Mike DiFelice and Woody Williams. Notice the metal halo on the top of my head, and the pole behind my wheelchair. Photo credit: Dona Glambert aka my nana!

It is absolutely crazy that it’s been over 20 years since I had my first surgery, the other two anniversaries will be at the end of October and first week of November.

I could sit here and tell you all of the things that happened, but it would be even longer than it is now, so I am going to stop here for now. If you would like to ask any question about my experiences; while I was staying at Shriner’s, recovering, or anything else, you can email me at gotmeghan.blog@gmail.com Be sure to get the dot in between “gotmeghan” and “blog” before you send your messages! I’d also like to say if you know someone who was a nurse at that hospital, worked in the B section, and remembers anything about the girl who drove her wheelchair with her feet, I’d also like to get in touch with you/them too!

Have you ever had surgery before? What was the location and reason why you needed to have it in the first place? Leave your answers below!

Book Review: “Five Feet Apart” by Rachael Lippincott

Howdy!

One day after I finished writing Monday’s post, I finally finished this book. I knew I was close to being done with it, but I figured I would savor it a little bit!

I came across this book twice – the first was when the trailers of the film adaption were being played on almost every channel and the other was through a fellow blogger who literally tweeted she cried more than she though she would. I definitely had to wait to read this but I can say it was worth the wait! Now I can finally check out the movie and see it lines up with what I was seeing in my head or not.

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Can you love someone you can never touch?

Stella Grant likes to be in control—even though her totally out of control lungs have sent her in and out of the hospital most of her life. At this point, what Stella needs to control most is keeping herself away from anyone or anything that might pass along an infection and jeopardize the possibility of a lung transplant. Six feet apart. No exceptions.

The only thing Will Newman wants to be in control of is getting out of this hospital. He couldn’t care less about his treatments, or a fancy new clinical drug trial. Soon, he’ll turn eighteen and then he’ll be able to unplug all these machines and actually go see the world, not just its hospitals.

Will’s exactly what Stella needs to stay away from. If he so much as breathes on Stella she could lose her spot on the transplant list. Either one of them could die. The only way to stay alive is to stay apart. But suddenly six feet doesn’t feel like safety. It feels like punishment.

What if they could steal back just a little bit of the space their broken lungs have stolen from them? Would five feet apart really be so dangerous if it stops their hearts from breaking too?

Description from Goodreads.

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First Impressions:

There was only one thing I knew about the story, and it was the disability aspect of it. I think reading John Green’s The Fault In Our Stars helped me a lot when it came to understanding cystic fibrosis or CF as it is mostly called in the book. It kind of put things in perspective thinking back to my own lung function, especially before I had my back surgeries in 2002. The technical term is: spinal fusion surgery. If you’re not too queasy about blood, you should check it out online. I wouldn’t surprise me if there’s a video of it on YouTube! Growing up, I was never able to breathe right because my spine was so curved, it was slowly crushing my right lung. What I didn’t know until about a month or two ago, is that my lungs are still undeveloped because of the damage my spine caused.

I think another way I understood the character’s stories is because I spent three and half months at Shriner’s Hospital for Children. Once the author was explaining the layout of the hospital, I was basically using my memory of the buildings I was in for my stay to reconstruct what it could look like, but it wasn’t as fancy as the book though. I also felt like I was both Stella and Will in different ways, because I remember being likeable among the nurses there but also a rebel like Will. As Will had found his way out of the hospital, I escaped once but it wasn’t to go onto the roof, I was actually searching for my mom.

I loved this story for many reasons. Of course, I liked the fact that it brought me back to a time in my life that seemed so small but in reality it wasn’t. Three and half months is a long time, especially when you’re surrounded to new people, other kids with disabilities (and that alone was different!), but on top of that you have the surgeries and recovery time. I was fortunate enough to have all three surgeries be successful, whereas there were others who had the same surgeries but their bodies were rejecting the rods. They had to be there longer. They were away from their families and friends, just like Stella, Will and Poe.

I was pretty pleased on the fact that I could picture everything going on; to Stella in a full handmade hazmat suit to the black truffles! I felt like I was right there with them, which is why it probably made me more emotional because I was around the same environment. We definitely had more than two nurses watching over us. A lot of them were like Barb and Julie, but instead of using a favorite nurse I enjoyed being around and let me tell you, there were a lot! I exchanged them with someone else. I miss them and I think that was the main reason why I didn’t want to put their faces in those characters. I was already emotional by what was happening in the story, I didn’t need to add another layer to it.

Stella had the right idea of vlogging her time in the hospital, and talking about her struggles with CF. And just being a supporter to others with the condition! A part of me wishes I had discovered blogging or enjoyed writing in a journal while I was there. We took lots of pictures but I would love to read what was going on in my head at that time. We had lots of activities, involving arts and crafts, but nothing I did ever survived the past 18 years. Yes, that number is correct. It has been 18 years since I had my surgeries. A lot of family members and teachers I had in school are probably going to be shaking their heads after reading that sentence!

By the time this post goes live, I will hopefully watched the film. I will also write up a review on that in next couple of weeks. I cannot wait to do that next! Okay, I’m done now.

Have you read or watched Five Feet Apart yet? What were your thoughts on it?

A-Z Disability Challenge | T : Titanium

I think one of the most popular subjects I tend to talk about, whether it’s online or out in public, is my Scoliosis and time I spent in the hospital to receive my rods in my back to help fix that problem. Honestly, I would like to stop doing it, because I really do speak up about it a lot! So, I’m hoping that this post will mark the end of it for a while.

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I was a newly eleventh year old when I finally had my third and last surgery at Shriner’s Hospital for Children in St. Louis, MO. The surgery actually took place at the Children’s Hospital since it was a major operation. My family and I were already familiar with it, because I had my second surgery there too! I’ve never been too sure about how long I was under but I want to say about eight hours. I’m sure some of my family members will comment below the correct time range if I’m wrong.

I spent about three weeks recovering from the “right side” surgery, which surprised the crap out of my doctor, so they made a schedule to get the final surgery done within a week later. It wasn’t that long of a gap between these two, but neither was the timeline to go home either. I feel like I was there for another week and a half because we came home just before Thanksgiving. For the operation itself, it consisted of stretching out my body, inserting the crushed rib they took out during the previous surgery, placing it into small spaces where the cartilage in the spine is suppose to be, afterwards putting the titanium rods in place; plus the metal pins at my hips. The last thing they did besides sew me back up was unscrew the metal halo I had attached to my skull for almost four months. Yes, we asked if we could keep it, but were told various stories about why that wouldn’t be a good idea. .

Now after 17 years, it is still pretty weird to see these really bright objects pop up on recent X-Rays. Even though I’ve only had one done that wasn’t for a check-up at Shriner’s, was even more surreal because for the whole of my childhood that’s where I went to get a look at the inside of my body, besides the time I got an MRI at Children’s Hospital, just before I was to have the second surgery! Other than that, I really forget that I have them. I mean, don’t get me wrong, I can definitely sense when the weather is changing drastically because of my rods and I’m certainly not a fan of going through a metal scanner and hearing it go off like crazy and it’s not all because of the wheelchair!

As time rolls by, the less sensitive my back has become to being touched. I use to try to move away from my mom’s hands whenever she gives me a shower, because it was so painful internally, but I’m happy to say I love being scrubbed down because it acts like a mini back rub too! Of course, I still have days where I do not like to be touched back there and it’s usually because of something that I’ve done, like slept in a different way or popped it, and yes, I try not to do that on a daily basis!

Here’s an interesting question for you, do you have any titanium plates or rods in your body? Also, do you get sick and tired of talking about how you got it like me?