No Boundaries

Ben at Sandbridge Beach, VA, 2 days after learning that spinal fusion surgery was coming up

Ben hasn’t had surgery since November 2011—almost 1.5 years ago. 2012 was a surgery free year! But on April 4, 2013, that will all change, when Ben undergoes insertion of growing rods along his entire spine to help address his severe scoliosis resulting from Schwartz-Jampel syndrome.

Over the last 10 years, Ben has been cared for by Dr. Emans, Spine Director of the Orthopedics Department of Boston Children’s Hospital. Each year Dr. Emans would examine Ben and say “the curve isn’t bad enough, but when it gets to be 55 degrees curved, we’ll have to talk”.

On August 10, 2012, when Sherin and Lucy were on a plane home from their fairytale Olympic London trip, I was with Ben and Dr. Emans looking at some pretty curvy x-rays of Ben’s vertebrae. Dr. Emans announced that the curve was now 61 degrees. He said “I don’t want to do this surgery, but I have to do this surgery”. It sounded all very non-negotiable.

But negotiate I did. Ben was about to start 6th grade and a new school. In our public school system, this is the biggest transition in K-12. We have 7 elementary schools that feed into one middle school at 6th grade, which then feeds into one high school in 9th grade. I knew how important it was for Ben to make a good first impression with his new classmates and friends. I didn’t want him to be the sick kid who would have a significant surgery right after school started and miss 2 months of school.

So I used the social-emotional development argument, and with a strong pulmonary function test (PFT) result in hand, we got the blessings of both Dr. Emans, and pulmonologist Dr. Haver, to wait until Spring. Dr. Haver insisted the surgery take place after March (all that influenza in hospital would not be a good thing for a surgery where one of the biggest risk factors is pneumonia)—but Ben also argued that he wanted to come back to school after the surgery. Since school was slated to end on June 26, we agreed that April 4 was a reasonable date to meet all these needs.

I was warned that this delay would lead to further spine curvature that could affect Ben’s lungs permanently—and indeed, his curve is now at 70 degrees—but it was a risk I had to take. The most recent PFT has shown the same results from August, so whew, I escaped the bad guy role on that one.

We gave ourselves permission to not think about this surgery until January, but since the first of the year, we’ve been making plans with Ben’s school, our work, and Ben has been undergoing many exams to get ready. His last exam is March 26—to check on the hips, which the rods in the spine will most definitely impact—and then voila, it will be April 2, my last day of work; April 3, Ben’s last day of school, and the day that Lucy and Charlotte go off to good friends’ houses for 2 days; and then, sigh, April 4.

Once again, we will find ourselves in that incredibly awkward position, of being upbeat and positive at 5 am as we drive to Boston, meet with the team, have casual banter with Ben and his surgeons (because the ophthalmologist and ENT will also do some relatively quick procedures at the same time), providing reassuring, calming and loving words to Ben as he undergoes anesthesia in the OR, silently but fervently uttering massive prayers for Ben and the wonderful, dedicated hands who will be taking care of him, and then waiting. Agonizing wait. 6 hours of wait. Oh, God, I dread that wait. All the while knowing the risks, the uncertainties of the success, and dealing with the knowledge that we are setting him up for repeat spine surgeries every 6-9 months, where the rods can be cranked to allow for additional spinal growth, until he finishes growing. And, at that time, another significant spinal fusion to end it all.

Writing is very therapeutic—just read Jamie Pennebaker’s work—and for this surgery, I plan on doing therapeutic and informational tweeting. Let’s see how succinct I can be as we update you on Ben. Follow us @BraveBenE while we give you our 140 character updates on happenings, thoughts, feelings, and more. It’ll be easier than signing in to Ben’s CarePage, and we can leave Facebook for the fun things. And tweet to us too—it will cheer us up!

And if you’re wondering why I am posting this when the surgery is still 12 days away—I’m traveling for work right now and have more time than I will next week when I take over being the solo parent. I always get more done when I’m out of the house! Plus I want to give you all time to connect with @BraveBenE on Twitter. Thank you!