Sunday was the best day and the worst day
It was Halloween and Bella had a great weekend full of festivities. It was topped off by trick or treating in the neighborhood. As the evening started to wind down though, it was time to prepare for the next morning. There were no fun events left between now and then, it was time to get this done.
We had to be at Children’s Hospital of Philadelphia by 6 a.m. Before we could sleep there were things to do. Bella had to shower and then wipe down her body with chlorhexidine gluconate wipes. They help to prevent infection. Bella had a bad reaction; her whole body began to itch. We cried as we tried our best to rinse it off.
We didn’t sleep a lot. At four we needed to wake Bella to give her pre-op medication. At 5:30 we got in the car to make the ten-minute drive to CHOP. As we walked through the hospital doors, my heart began to pound, and my stomach felt sick. My daughter was quiet and calm as she started her journey that has left her family, doctors, and hospital staff in awe.
Our girl was scared, but so kind, cooperative and charming. The pre-op “giggle juice” enhanced her funny personality and we laughed in the minutes before they wheeled her away. Her Dad and I kissed her good-bye and began the longest wait of our lives.
We walked into the surgical waiting room and into a sea of nervous parents. A kind nurse named Susan was our eyes and ears. She would go into the Operating Room, see how things were going, and then update us. We watched for her as the clock slowly ticked.
As the morning turned into afternoon, most of the other parents in the room had been taken to recovery to see their young patients. We were still waiting. Finally, around 2:30, we were escorted to recovery. Bella looked small and pale in her hospital bed. But she tolerated the surgery well and was not feeling pain. She looked beautiful.
Rock Star of 4 South
When she started to come around, she gave us a smile. She couldn’t believe it was over, to her the very long day passed in a flash. That was a tremendous relief to us. Nearly six months of worry and fear, gone in the blink of an eye.
Bella is a rock star on the 4 South wing of CHOP. She felt some pain, but it was very well managed. She didn’t complain, not even when her chest tube was removed. She was called the “favorite patient” by more than one member of the team taking care of her. They all signed her get well bear, with pleasure.
The Fix
Seeing her x-rays after the procedure was a bit jarring. Our daughter now has six screws in her spine and a guide wire. The shock of seeing the hardware in her body quickly faded as we realized her surgeon had a big smile on his face. Bella’s curve went from nearly 40 degrees to 23 degrees. As she grows, it’s expected to continue to straighten. She’s lost no flexibility, there’s no spinal fusion. Those are the things that scared me the most about this diagnoses, and they most likely won’t happen.
Bella left CHOP Tuesday evening, the earliest a VBT patient can safely be discharged. Of course, she cleaned up her hospital room before going. That’s how she rolls.
We’ve been home a few days now. So far, her biggest complaint is that she can’t take a shower for a few more days. She’s marking the days until she can return to school.
The support, prayers, positive vibes and well wishes we’ve received have been amazing and such a tremendous help to us. Thank you.
For 12 years I worried my daughter would have scoliosis, I felt sick with every sign of it I spotted as she grew. I didn’t want my child to go through what I did. I don’t want to see any child go through that. During our first visit to her brilliant surgeon, he said to me, “What you went through was life changing, for Bella it will be a bump in the road.” I’m so relieved that the bump is now in the rearview. She is healing and the fear is fading.
I encourage anyone whose child is facing a scoliosis diagnosis to learn more about VBT and always know you can reach out to us. Having the support of other families who have gone through this experience lessened our worry so much.
