As many of you may know (and some of you may not) our daughter Marlee was diagnosed with scoliosis in the fall of 2018. After testing and many doctors visits, the orthopedic team prescribed the brace in hopes of avoiding scoliosis surgery. (You can read her diagnosis story here).
Marlee wore the brace religiously every night for three months. In June of this year, we went back to the specialist to check on her and see how well the brace was working. We prayed hard in those three months that we would avoid surgery. We went to that appointment that day feeling hopeful!
Scoliosis Surgery
During her appointment, the team had new x-rays taken. (The second x-rays taken since her initial set in November 2018.) The doctors evaluated her new x-ray but it was quick to see…her curve had progressed. Despite our bracing efforts and endless prayers, we couldn’t stop the progression from a 49° curve to a 63° curve. There was no choice. We were going to schedule surgery.
Marlee put on a brave face with this news but you could tell she was scared. We all were. But Dr. Jones was so calm about everything, very confident in his abilities and that helped to ease our concerns. He also explained that, while this was a major surgery, without it she would continue to progress and would have issues all her life. We knew what we had to do.
Click here for more information on scoliosis.
Preparation
We talked to the orthopedic team further and also received a helpful booklet. The next step would be to schedule surgery and since it’s such a major surgery and long recovery time, I wanted to make sure we could get her in before school if possible. And we did just that. Surgery was scheduled for July 11, 2019. (Just a few weeks from the time I called!)
We let Marlee live those weeks up! She hit up the pool, took bike rides and hung with friends. The week before surgery she went away to her first CYSC summer camp experience and it was just what she needed!
The week of surgery we went down to the hospital for a walk-through and some testing for preparation. We were ready to go for surgery. Or as ready as we were going to be!
The procedure
The actual scoliosis surgery would consist of straightening the top of her spine. To do this, they would place two metal rods and screw them to the spine. While they do this, they rough the bone with the goal of the vertebrae fusing together as one, around the rods.
While this sounds just awful, after she heals she will be able to fully function. There is 6 months total recovery (meaning no full activity sports until then) but after that, she’ll have no limitations. Our doctor told us he had people go and continue playing football and gymnastics after this procedure! She won’t have to have any maintenance procedures done either. The only long term side effect is arthritis in her later years (but he assured us nothing as bad as if she didn’t have the procedure!)
Long story short—modern medicine is freaking amazing. Praise God.
Surgery Day
We woke up first thing in the morning and made it to the hospital and got all checked in at 5:30 am. Next, we went back with her for post-op and everyone was just so kind to her and us. All three of us stayed strong until that moment we had to say goodbye. I knew she was in good hands but it was so hard to see her so scared. Luckily, she doesn’t remember anything past that point!
The surgery was slated to take about 6-8 hours. We were given a private waiting room which was nice and took a lot of walks to keep our mind off of her. Surgery began at 7:30 and they called me when they started. They also called every hour with an update. Dr. Jones had a colleague help with surgery and it ended sooner than we thought. We got the call everything went well and all was good at 12:30!
She took awhile to come out of anesthesia but once she did, we got to see her and then we were taken to her room on the recovery floor.
The rest of the day was just her resting and coming off of all the anesthesia. She wasn’t in much pain at all yet but they started on her pain management right away. Luckily towards the end of the day she seemed more herself.
Day 2
The goal for day 2 was to get her up and out of bed so they could remove the catheter. It seemed crazy to me that just the day before she was in major surgery! She was such a fighter though and was up and to the bathroom (with help) by the end of the day. Marlee seemed more herself this day too but she was feeling a bit more pain and discomfort. They had her on regular medication for it and had a pain pump she could use as she needed. She handled it well!
Day 3
Marlee continued to get better each day. She was getting more confident and moving herself a bit more. Still had to have assistance to the bathroom but only one person. She did have complications with her IVs and they ended up taking them out. Marlee was happy about this and she did great with taking all oral medications so we stuck with that. That only helped with her mobility!
Day 4
This day started out great! We had a priest come in and was able to pray with us and offer us communion. He even offered to dedication his daily mass for the next day to Marlee! The room just filled with joy at that news! However, the rest of the day went downhill a bit. She started getting stiff because she was worried she would hurt. An attitude started creeping in as well. She didn’t want to do her physical therapy and I think was more afraid of pain than actually experiencing any. Between Erik and I and her awesome nurses, we had to tough-love her way through this day. But we had great hopes we could go home tomorrow!
Day 5
Our hopes of being dismissed left when they took a morning x-ray and confirmed she had fluid building on her lung. Unfortunately there was so much in there it would take too much time to go away on its own so they recommended a procedure to remove it. That procedure was scheduled for the following day. Marlee was so upset by this. We all just wanted to go home and she hated the idea of another procedure! But we needed to do what we needed to do! And we assured her, if she could go through what she went through for back surgery, this would be a walk in the park!
Day 6
Marlee had her lung procedure done first thing in the morning. I was able to go back with her and it was a quick 30 minute procedure. But they drained 800 ml of fluid off her right lung! No wonder she was struggling to breathe! Now we were back on track and as long as the x-ray the next morning was clear, we could go home!
Day 7
Erik was with Marlee in the morning when they came and did her x-ray and all was good! We were good to bring her home! I came back down with Milo and picked her up and we were all home by lunchtime! It was such a blessing and Marlee did great through the travel and once we got home. Funny how being home does that do you!
On the road to recovery
I still can’t believe our girl had scoliosis surgery. The entire week in the hospital with her was a blur. So many prayers said and emotions felt. Some days I felt like if I hadn’t said a rosary and had Mary walking with me, I wouldn’t have made it through as easy. God is so good 🙂
The entire staff at Dayton Children’s Hospital was just amazing. Every nurse on every shift was beautiful. They had volunteers come in with crafts to do, games to play, dogs to pet. The doctors that came in and the physical therapist were also just as amazing.
Marlee’s strength through the entire process was astounding. I have no idea what it would be like to go through something like this at 12 years old! She has been recovering so well, gets around great on her own and loves sleeping in her own bed! Her only restrictions right now are to limit bending (except at the hips) and twisting. And no lifting anything over 7 lbs.
We are gearing up now for a follow up appointment this Friday and she is hoping for a bit more freedom. We will talk about physical therapy as well. I believe we are all on the right track to get her back to school on time so she can start 7th grade with all her friends.
Thank you
I want to thank each and every one of you for your thoughts and prayers through this process. We couldn’t have done this without you. And thank you to our family for helping out with the other four kids so we could be at the hospital with Marlee as much as we could. Thanks to everything who thought to give gifts, make food or help at home. It’s overwhelming how much love everyone has…especially for our girl.
Marlee is going to do such great things. I can’t wait to see her get through this recovery and take over the world 🙂
