Because of her pneumonia and hospitalizations, Jilly wasn’t healthy enough for surgery until a couple of years after that first conversation. At age 14 there finally came a window when doctors felt confident that she’d be able to get through it.
The weeks and days leading up to her surgery in January of 2017 were brutal. I was consumed with fear, anxiety, and apprehension. I tried to stay positive and hopeful, but it was impossible not to imagine the worst because spinal fusion is considered a major surgery and has a high risk of complications.
The night before surgery was one of the hardest experiences of our lives, but I am happy to report that once we arrived at the hospital for pre-op, a sense of calm came over us. My husband and I felt ready to get the surgery underway, and couldn’t wait to see our brave girl later that day. In the weeks leading up to the surgery we had talked to Jilly at a superficial level about what was going to happen, not sharing too many details but explaining how much better she’d be feeling after it was done. We also talked with many families who had already gone through the surgery, and their feedback was similar: Their children were living better lives because of the spinal fusion, they were healthier and happier. We recalled these conversations as we waited nervously for Jilly’s surgery to end, and they truly helped us get through the day.
For example, Oakley had spinal surgery when she was 12. Oakley’s mom, Shannon, describes her today, at 13, as so much more alert and confident. Shannon says Oakley’s stamina is better when it comes to sitting, eating, and staying awake. The surgery also helped with Oakley’s reflux and some of her digestion issues.
But the feelings you experience leading up to surgery can be excruciating. Brooklyn, who is now 17, had spinal surgery when she was 12. Her mother, Kelly, remembers how heightened her emotions were leading up to the surgery. “Although I was a seasoned ‘Rett mama’ by the time of Brooklyn’s surgery, my fear and anxiety were at an all-time high leading up to surgery day,” Kelly shared. “Honestly, though, I can thankfully say all of those emotions were WAY worse than the actual surgery and recovery experience.”
Jilly’s surgery lasted about seven hours. She spent about 36 hours in the PICU at Boston Children’s Hospital afterward, where she was carefully monitored. Within just a few hours she was taken off the ventilator, which she had been on during the surgery. Her face was a bit swollen and quite pale, but overall she looked like our Jilly. It was the best feeling in the world to hold her hand and know she was okay.
In less than two days Jilly was discharged from the PICU and admitted to a different floor for recovery. I had heard it would be important to get her out of bed and into her chair quickly, but I was shocked to have her do so two days after surgery. In true Jilly fashion, she literally rose to the occasion and tolerated sitting. I will never forget the image of her sitting up so straight and so tall for the first time. She was able to make eye contact and, after so long, she was finally going to be able to be a part of what was going on around her, as well as be at less risk for illnesses and hospitalizations.
Jilly had a few complications on the road to recovery. It is impossible to predict or plan for these, and every person and surgery is different, so we dealt with each situation as it came. She was discharged one week after the initial surgery but unfortunately rehospitalized due to infection despite our diligent care. I have talked with many families who have daughters who experienced zero complications and who sailed right through the surgery; they were home within a week and back to school within just a couple of weeks. I cannot overemphasize that every journey with scoliosis surgery is unique.
Although the experience was intense and scary, we’d do it again in a heartbeat. Today, at age 19, Jilly sits tall and is more alert than she has ever been in her life. She has been pneumonia-free and stayed out of the hospital for more than five years. She is the happiest and giggliest we have ever seen her, and that is what makes us the most happy.
There are many things I wish I had known before embarking on this journey with Jilly. Here are things that come to mind that might help you if you are looking at spinal fusion surgery:
Tips for leading up to surgery:
Things to consider packing for the hospital:
Tips for when you’re in the hospital:
Tips for after surgery:
If you are considering spinal fusion for your loved one and you want to correspond or talk to me about my experience, please don't hesitate to email me at email@example.com.
Kelly Butler and Shannon Madden contributed to this post.