Session Twenty-Two: Making the Crooked Places Straight, Part Three

Session Twenty-Two: Making the Crooked Places Straight, Part Three

This Travels with Our Trachie recounts a new journey to an unchartered territory as we traveled 550 miles across the country to a hospital which specializes in skeletal dysplasia.

It was bright and early in the morning as we made our way to the hospital from our hotel room in Wilmington, DE. Today was the day our daughter would undergo her first procedure to place a plaster cast, while under sedation, for scoliosis treatment. Before going back to the operating room, we dressed our girl in the silver seamless shirt the hospital provided which would remain under the cast. And, as was our tradition, we prayed the Our Father prayer just before they wheeled our daughter away.

It was no time at all before the surgeon found us in the waiting room to report that the cast was on. He was pleased to share that her spinal curvature was corrected from 65° to around 25°! And even better news was his report that her spine was very flexible, the most flexible he had encountered with a child with campomelic dysplasia. What wonderful news! Yet, it likely wouldn’t change their course of action. Our daughter would still need intervention throughout her growing years. “One day at a time,” I reminded myself.

The surgeon made sure we understood that scoliosis treatment wasn’t like fixing a broken bone. Our daughter would always have scoliosis. No matter how long we left her in the cast, once we removed it, her curvature would return. He reiterated how pleased he was to discover the flexibility of her spine and assured us that we would be called back to the recovery room soon to be reunited with our daughter.

It’s always such a relief to see our daughter following the separation of surgery. And it’s always my great desire to scoop her into my arms as soon as I see her, but the reality of our situation always triumphs. Inevitably, I succumb to the fact that all I can do is stand at her side and stroke her hair, while stifling the desire to crawl into bed to cuddle with her.

As we stood by her bedside that morning, I had to giggle at the sight of her baby doll who she had taken with her into the operating room. A nurse had put a cast on the doll and tucked her in beside our daughter. However, my smile vanished as I pulled back the covers to reveal the matching pink cast that covered so much of our daughter’s tiny body. It was a gut-wrenching moment. The cast was so tight against her hips, and it looked terribly uncomfortable. The tears puddled in my eyes as I reassured our girl who was waking from the anesthesia.  

Not too long after she roused, a nurse wheeled her bed to a different area of the hospital called the casting room. The next part of the process was to soften the edges and then apply duct tape to hold all the padding in place. When they were done, you couldn’t even tell that she had chosen a pink cast seeing as it was covered with the zebra-striped tape she had chosen.

For the first casting, we were to be admitted into a step-down unit for observation before making the long drive home. Her orthopedic surgeon wanted to ensure that she was cleared by a pulmonologist. It was certainly a wise idea because I definitely had my doubts that our daughter would be able to breathe with the restrictive cast around her chest! The next morning, we were given the green light for discharge.

The next hurdle would be how in the world she was going to be able to sit in her car seat for twelve hours as we drove home. She could barely sit for five minutes at a time without needing to lay down! Somehow, we managed to make it home to begin this new chapter of our journey.

On the next Travels with Our Trachie, we’ll share what life in jacket cast is like for an active soon-to-be kindergartner.