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We (Dez, Sarah, and Jaiden) arrived at our standard Gillette Children's Specialty Healthcare marathon of appointments on May 25th, 2021. On this day, Jaiden was scheduled to see his gastrointestinal physician, physical medical and rehabilitative physician, and a spine physician's assistant....really par for the course! This was a light day! We arrived early and stayed with our best friends where Jaiden took his first slip and slide ride! It was a beautiful weekend filled with friends and fun. While sitting and waiting for Jaiden's Dysport injections (that relax his muscles) to begin, the spine P.A. came to see Jaiden in the procedure room. It was at this moment, that we realized something wasn't quite right. We later learned that Jaiden's spine curve (which 12 months prior, wasn't a curve at all at only 15 degrees deviated) had now progressed to 62 degrees curved and that surgical intervention was the only option.
Taken aback, we quickly scheduled a second opinion at Shriners Twin Cities Hospital for June 3rd. We had to believe that something was wrong with their x-ray positioning chair, as even the Spine P.A. couldn't explain to us how someone could progress almost 50 degrees in just 12 months. Unfortunately, our second opinion was just as daunting as the first, however, this one painted a pretty clear picture of what we were up against and gave us the opportunity to settle into our new reality. Surgery really was the only option. Letting the spine progress without surgery meant compressing major organs and putting Jaiden's life in jeopardy.
Fast-forward to September 13th, 2021. Jaiden, Sarah, Dez, and Tracey took a trip up to see the Spine Surgeon, Dr. Walter Truong, at Gillette Children's Specialty Healthcare, who was recommended by the Shrine Hospital Physician and is considered top-notch in his practice. We were informed at this appointment that typically surgical intervention is considered around 50 degrees, but that we could continue to wait until after Jaiden had a chance to ride unlimited roller coasters in December at Disney Land to proceed with this major surgery. Jaiden was estimated to be around 90 degrees when we returned for surgery (all in the lumbar region), as he was 72 degrees already at this September appointment. We set the date for February 7, 2022. Dr. Truong informed us that the surgery would take about 5 hours, but assured us that the surgery is very safe and that because Jaiden's spine is so flexible, his case is pretty straightforward. (Whew). We left feeling a little more relieved than we did going in.
On Monday, January 10th, 2022 Jaiden received his Covid booster shot with permission from his surgeon. On January 13, 2022, Jaiden tested positive for Covid-19. A moment that was dreaded for 2 years was here, and with impeccable timing. We quickly consulted Jaiden's medical team and were told we should respond assertively with Jaiden's "yellow zone" of his pulmonology control plan and this was effective. (THANK GOODNESS). Jaiden's O2 levels were stable, he handled his treatments well, stayed positive and energized (mostly) in demeanor, and was back to school on his first date possible for return on Tuesday, January 18th. We contacted Gillette on Monday, January 17th, only to learn that by policy, it's expected to be clear of all symptoms (especially Covid) for 21 days prior to surgery. Monday the 17th was EXACTLY 21 days. We were close. Too close for comfort. We would now be watching Jaiden's every move and keeping him away from (any and) all germs possible!
January 21st, 2022 - We had a virtual visit with Jaiden's spine surgeon who reiterated that Jaiden's case would be one that he feels will go smoothly and that Jaiden should do very well given the traction films (flexibility test) that we had completed earlier on. He said that Jaiden's spine would not change in flexibility since September and that he expected the flexibility to remain consistent. Dr. Truong said OR that day is scheduled for 9:30 am, he expects to make his incision by 11:00 am, surgery time to run 5 hours, and that he would be checking in with us around 4:00 pm. He said patients who have covid close to surgery can have decreased effects - so he said we want to be cautious of J that he’s not having symptoms and so we aren’t rushing into it. We are very close to the 21-day mark. But we told him McKercher will assess next week Friday, and he felt good about that. J had one big cough before the appointment started that I mentioned but I told him he’s been doing really well, and even through covid, he did well, so we were surprised but also want to take the cautions necessary to be sure he’s ready. Jaiden’s Pre-Operative Physical is on the 28th with Dr. McKercher, and he said we better get a chest x-ray just to be sure everything is in the clear. We agreed. We will be doing his nebs, vest, and cough assist every day till surgery either way. We really think J is ready and doing fine, but we can never be too cautious. During the appointment, Jaiden was talking to Dr. Truong the whole time and was very excited to see him. Dr. Truong said there is less than a 1% chance of a complication where the bottom part of the spine would not fuse, and then usually they have to go back in to get it to fuse, sometimes from the front of the spine. He said this surgery is a 1 and done. He mentioned that sometimes in skinnier kids, the hardware can become problematic- (screws, rods, etc) and could become prominent or create skin breakdown, so he said in that instance, they wait for 1 year for the spine to fully fuse and then they take the hardware out a year later. He said that J could be reclined in the van on the way home and that should help him to tolerate the 4-hour vehicle ride home when we are discharged. Dr. Truong showed us J’s scans again from September and said that he would not bring the spine totally perfectly straight but enough to get the skull over top and centered over the hips.
Dr. Truong said that he thinks J is going to do very well with this surgery and reassured us that he performs this surgery often. Until then... we wait...we pray... and we keep Jaiden from any more germs! The countdown is on!
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