Our Scoliosis Awareness Story
Resilience, Healthcare Customer Experience and One Tough Kid
First a Little Context…
Being a working parent is a constant juggle. Parenting teens comes with different challenges than when they’re little. More emotional, less physical, and equally rewarding to see them overcome.
In 2021, my kids were both diagnosed with chronic health conditions. Two unrelated conditions and each with the thought…
Whoa…what…back-up…we’re still doing Covid.
But sometimes life has a way of piling on. So with two more balls, we juggled forward with support from family, friends, coworkers, and more.
I’ll tell each of their stories over the upcoming months, starting with Scoliosis Awareness in June.
June is also Pride Month. And I’ll tell this June story with my kid’s preferred pronouns now, celebrating awareness in the same month (and ironically the same kid). A story no less important, though still in the making.
Building on my Work in Progress series, I’ll also challenge you to walk this summer. For every year of your life, walk a mile. And in honor of someone in your life, who’s overcome extra challenges, add 10% to the distance or carry some extra weight.
June — Our Scoliosis Awareness Story
Scoliosis is a deformity of the spine, making it curve like an S or C. Scoliosis Awareness promotes public education, early detection and treatment options for the millions of people affected.
In August 2021, we received our diagnosis at a 13-year well-child check. When caught early or less severe, scoliosis can be managed with different treatment options, like the Schroth method or innovative care regimens from the National Scoliosis Clinic.
Ours was not caught early. Nor was it less severe.
As parents we questioned ourselves. With a baggy-clothes wearing teenager, it was not obvious. Until it was. The crookedness of his shoulders and middle back.
Seeing the x-ray for the first time was a moment of shock with a matter-of-fact delivery, now from an Orthopedic specialist.
You are going to need surgery.
Through an MRI, we learned his spine was not only curved but also twisted, putting pressure on his left lung.
So with this news, not life-threatening, but also not to be ignored, the first decision we had to make was when.
Circumstances of Timing
Recovery was likely going to be 4–6 weeks. We talked through options as a family and decided to go forward sooner than later, slotted in our life and school schedule.
But sooner was indefinite, as our hospital wasn’t fully back to normal. Not overrun with Covid patients yet, but also not scheduling surgeries. In Sept, we set a tentative date out in Feb.
I won’t use names in this story though if you want to know, feel free to ask. I will undoubtedly recommend our Doctors and the world-class teams from Standard Children’s Health and John Muir Health.
Surgery Day
Timing was confirmed in late Jan. Scheduled for the Tuesday after President’s Day, we tried to make the long weekend fun. Though we also had to all pass Covid tests, 48 hours before. Not passing would have canceled the plan.
Our surgery was scheduled for 7 am and estimated to take 10 hours.
In the months leading up, our surgeon was straight-forward yet detailed, answering our questions and explaining his approach, with precision, on how he would fix our child’s twisted spine.
I really had no experience with surgeons before this. I found his kind-directness comforting. We learned people would travel far to be seen by this Doctor. We were so fortunate. He was in our backyard.
There was another Doctor critical to our experience this day. He called the night before, to introduce himself and casually asked our child about his interests (music). He talked us through what to expect the next morning. He’d be with our child through the surgery.
If our surgeon was product, engineering and quality assurance, this man was the CXO.
He was the anesthesiologist.
We checked in at 5 am. I felt numb, operating on adrenaline (and little sleep), preparing our child for surgery. Outside calm while inside screaming…
I volunteer! Take me as tribute!
It was close to 7 am and the anesthesiologist came in. And like our conversation from the night before never stopped…he just started talking with our kid…about music. His cap on his head had music symbols on it.
I was awestruck in this moment. This foresight to customer needs.
He’d be one of the last people we saw, before handing over our child for this big event. I wrote about a bridge of trust recently and this was that.
Our plea was telepathic…
Please don’t let him feel this.
His response…
I got you.
The anesthesia had an immediate dozing effect, and then they took our child away.
After which…
I crumbled.
[My husband and I were managing this morning together, and he admits, this was one of the hardest moments of his life.]
10 Hours Later…
After my emotional burst, we went outside. We walked around the block, over and over. We played games in the cafeteria. We waited…getting brief updates throughout the day.
At 4:30, we were called back to meet the surgeon. He showed us a new x-ray of what was now done, and we then went to the Pediatric ICU.
Seeing our child for the first time was jarring. He was hooked up to so many things. But he was also, taller. Noticeably taller. 2 inches taller, now with a straight spine.
Within an hour he was awake, but still affected by heavy meds. We had a seemingly drunk, taller teenager. His demeanor was so childlike at first and then FOMO kicked in. Yes, we have a teenager.
Mom, where’s my phone? Do my friends know I’m awake?
Omg child, you just had a 10 hour surgery.
A nurse asked how he felt.
I was sure he physically felt…nothing. But his response floored me.
I can breathe better.
And you could see on the x-ray. His organs had space again. It was a moment of reassurance. We were indeed moving forward.
The Day After
Child was uncomfortable. Not in pain, but uncomfortable in the hospital. With heavy meds wearing off, our introverted child was uncomfortable…with all this attention.
Our room was a revolving door of doctors, nurses, and hospital staff. We were the only family in the ICU, and it felt like everyone in the hospital was taking care of us. Each well- intentioned and caring, though in total, too much…
Mom (crying), make them stop.
I found myself sorting visitors like cards. I simplified our food ordering. I remember thinking, ‘Please God, don’t send me to hell’, as I asked the nurse to ask the chaplain not to come back. I deferred some staff to the next day.
One day nurse was going to be with us for 3 days. Witnessing this stress, she changed her schedule, to give us more consistency over our anticipated 6-day stay.
Pediatric ICU nurses are angels, reincarnated.
Another awe-inspiring moment of customer care.
Through all this, child was not feeling good. Not interested in talking (or eating or drinking). And when the time came to sit up, to dangle his legs over the bedside, and sit upright for the first time…he puked.
Which led to something I did not expect. Or know to expect. I don’t know what I expected. But when the Doctor ordered a blood transfusion, I again felt numb. It was presented to me, as a decision I needed to make, with legal documents.
I understand, as with many healthcare decisions there is liability and risk. Though I was tired and not thinking rationally. And on the subject of blood, well I barely tolerate PG-13 movies with violence. My default with blood is…look away.
The Doctor answered our questions. What are our options, what are the risks? I consulted my personal medical board — two mom friends (an ER doctor and a physician-in-chief) and my cousin (a registered nurse). They were invaluable through this experience and especially in this moment.
My board was unanimous…
Sign the papers. Take the blood. He will feel so much better.
And so we did. They brought in the bag and showed it to me.
Like a waiter presenting a bottle of wine…
My thought…
Yeeup…looks like blood.
Fierce Determination
He will feel so much better. This was an understatement. To the person who donated that bag of blood — thank you.
The next day was wildly different.
Child was hungry, alert, and determined to get back home.
You want me to sit up? ✅
Stand up? ✅
The next day…
Walk to the bathroom? ✅
Walk around the room? ✅
The next few days…
Walk down the hall? Walk up and down the hall? ✅✅
A nurse commented…
He really wants to get out of here.
Yes, yes he does.
Each day brought progress and less things connected. Child was adamant to get back to his room at home, which is upstairs at home. OT and PT supported but it meant going up and down stairs, before we left the hospital.
Child said…
Game on.
On day 6, we were doing stairs. Got discharge papers and the final IV out. ✅✅✅
Of the people coming in, one was a music therapist.
Child’s love of music was known to everyone, but the timing wasn’t working. Our nurse that stayed, on the last day, made it happen.
The therapist came in with a guitar and played for us. It was the perfect, peaceful way to end our hospital stay.
Back Home, Back to Life
This article explains Cobb angles and how scoliosis is measured. This one explains spinal fusion. These images are both shocking at first sight, though the resilience of the human body is evident in our child everyday.
In the first 2 weeks home, pain management was around-the-clock. We set alarms every 3 hours. It was like coming home with a newborn again.
In the daytime we’d walk as his whole body needed to adjust to the new hardware (titanium if you’re wondering, and so far, has not set off any airport metal detectors). You can find some fun shirts on this topic.
After 3 weeks, child re-engaged with schoolwork and friends visited. In week 5, he went back to school with lifting and bending restrictions.
At 12 weeks, lifting restrictions were lifted. After 6 months, cleared to…
Do whatever you’re comfortable doing.
Which is seemingly…everything.
Fast forward two years and interrupting teenager’s active life for the annual x-ray is mildly annoying to the now 16-year old.
I feel fine! (Feb 2024)
With a scar down his back as the only visible evidence, he remembers almost none of what I’ve shared.
One sweet memory child has involves one night nurse. I remember seeing him walk in our room for the first time…he was a large man. An angel of football-player stature, turned Pediatric ICU nurse.
Each night, the nurses would orchestrate pillows around the bed, to alleviate points of discomfort and help child sleep. This was an all-night process. Well this nurse’s physical stature made it easy. He just picked child up like nothing and adjusted the whole set-up. And child remembers…
He did pillows the best.
As a parent, the world-class care from Standard Children’s Health and John Muir Health is something I’ll never forget.
Child wants a tattoo down his spine to amplify the scar.
When you’re 18 child…go for it. 💚
Stand tall in your scoliosis warrior pride.
Follow me on LinkedIn and Medium and check back in July, for our Juvenile Arthritis story as well.
