Adelynn
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Survivor
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Adelynn has severe spastic quadriplegic cerebral and is full time in a wheelchair. She required a kidney transplant at the age of 5 secondary to end stage renal disease. Despite her medical limitations she lived life to the fullest and was included in all family activities. However, she developed rapidly progressive neuromuscular scoliosis which was significantly impacting her quality of life and ability to sit in a wheelchair. She was in constant pain. The family had sought numerous opinions in regards to her spine, however given her complex medical history she was deemed not be a candidate for surgical intervention.
Adelynn presented to us in 2022 for another opinion. Given the impact that her severe scoliosis was having on her quality of life we entertained the idea of proceeding with surgery. We had a lengthy discussion on the pros and cons to this big operation and the family was adamant it was the right decision for Adelynn. Our nurse navigators walked the family through the entire surgical process.
Adelynn underwent a successful posterior spinal fusion and instrumentation to the pelvis and was in the hospital for 7 days. For the first time in years she was able to sit upright in her wheelchair, pain free!! She is now over a year out from her surgery and is doing great and has regained her joy in life.