December 7th 2017.
Shriner’s Hospital for Children.
Sophea’s spine appointment for kyphosis, scoliosis, and lordosis.
We have waited months for this appointment. We knew what was coming. We anticipated, agonized even, and then tried our best to put it out of our minds to forget what was ahead- what we were sure the doctors would tell us.
Surgery was coming.
We had been to the pulmonologist. We knew that her PFT (pulmonary function test) wasn’t the best. Her PFT showed one area of her lungs working at 47%, and once this number touched the 30’s%, surgery would be too risky and therefore not an option for her. We also knew the X-ray showed her spine was beginning to condense her lungs.
But when you are sitting in the doctors office, listening to one of the best children’s orthopedic/spine specialists in the USA, tell you that it is time to have the surgery, it somehow takes your breath. I watched the bravest 12 year old I know cry. I rubbed her back, as she turned away from me to hide her falling tears.
Nothing I could do or say would make this be better for her. Not the overnight girls trip I planned for us. Not soaking in the hot tub together. Nor singing all the wrong words to the radio loudly in the 45 min car ride to the hotel. Not even shopping (one of her favorite things to do!) at the King of Prussia Mall. Nor the spa treatments, I booked for Saturday. These were welcomed distractions, but that is all. ❤️
In the clinic, Dr. Samdani explained TO HER what to expect.
I loved that.
I watched this incredible doctor sit right next to my girl, as she cried, and answered every question she had. He looked at her, only occasionally glancing up at me. He reached out to her knee, her hand, for comfort as he explained the important details in the most comforting way possible. He treated her like a person, not just a patient, not just a child, but a person with very real feelings. When he called for the pulmonologist to speak with us about her surgery as her PFT sits, the pulmonologist did the exact same thing. And so did the anesthesiologist. It was extremely refreshing to witness these big amazing doctors kneel down and speak to Sophea, as if she was their only patient there.
I cannot speak more highly of the team of doctors we will have working on her surgery.
And still it is scary.
She will have rods and screws placed. She is not a candidate for other types of spine correction where more mobility is maintained. Because of this, they are only aiming for about a 40% correction of her kyphosis which is currently measuring at a just above an 80% curvature. In doing this, she will maintain a little more mobility than if her entire spine was corrected.
The surgery itself will take several hours.
For recovery, she will remain in the ICU for about 2-3 days, and then move to the main floor for about 4-5 days. If all goes well, she will return home on very limited activity for 6-8 weeks. No school, no extra curricular, no stairs- which will be difficult since her bedroom and the showers on upper level of our home. We will figure out those details later.
In the meantime, we need to take her to the pulmonologist, cardiologist, have a spinal MRI (they said this would take about 2 hours), have blood work done, and have her seen at the Muscular Dystrophy clinic or at least her neurologist to obtain clearance to proceed with the surgery. We just had all of these appointments within the last 6 months, but now we get to do it all again!
This is our life and we are making the best of it. ❤️❤️❤️
Post Script: Sophea’s spa treatment included a bonus Reiki session. When the beautiful therapist was finished with Sophea’s session, she came out to speak with me. With tears in her eyes and goose bumps down her skin, she relayed that she could feel such a strong connection between Sophea, God, and the angels. She said she could sense a higher purpose for Sophea in the outcome of everything she is struggling with. This was the first time we had met this massage therapist/reiki master and we will certainly be back.