I first met Sofi May 6, 2008, the day after she was admitted to Children’s Hospital of Wisconsin. She was suffering from progressive weakness, making it difficult for her to breathe. She was diagnosed with Guillain-Barre syndrome, a disease that causes the body to attack its own nerves. Sofi’s disease progressed through her body, nearly causing complete paralysis. Soon after our meeting, she was placed on a ventilator to help her breathe. Sofi’s parents were overcome with fear and apprehension.
The Critical Care team worked with neurologists, therapists, pharmacists and nurses to care for Sofi. Time, treatments and strength were required for her recovery. Sofi was able to wiggle her fingers and toes but not much more. Her family was incredible. Mom, dad and sister were by her side helping her through the care she needed to get better. The team met every day at Sofi’s room to discuss her care plan. The family also was there asking questions and participating in the discussion.
My rotation on the unit was over, but I continued to visit Sofi to check her progress. Her mom still kids me about my ever-present cup of coffee (I am a caffeine junkie). Each day Sofi became a little stronger and on May 16, her breathing tube was removed. She was able to breathe on her own again. That was a great day for her and the family. It made me happy to see them all relax a little.
The time came for the real work, rehabilitation: occupational therapy, physical therapy, speech therapy. Sofi needed to learn how to eat again!
Sofi’s recovery was inspiring. She improved every day. I am sure it seemed slow to her and her parents, but to us it was awesome. On June 6, Sofi went home. She still had therapy and doctors visits. You should see her now. Sofi is a high school senior and is looking forward to attending college. Because of the incredible people who cared for her here, Sofi wants to become a nurse. She is a lifeguard, a certified nursing assistant, on the teen advisory council here at Children’s Hospital and has taken summer classes in London. There is no stopping her.
Sofi and her family’s journey at Children’s Hospital is all about bringing a team together to give the best care possible to children and their families.
I encourage you to watch Sofi tell her story in the following video:
~ Rainer Gedeit, MD, program director, Pediatric Intensive Care Unit, Children’s Hospital of Wisconsin