In November 2023, Ian came to the Emergency Department with body aches, fevers, and a large bruise on his left arm. Ian was admitted to our Pediatric Intensive Care Unit and doctors quickly diagnosed Ian with an invasive group A strep bacteria infection. Invasive group A strep is a rare and sometimes life-threatening disease in which bacteria invades blood and tissue. This infection caused a series a complications and responses in Ian's body, including septic shock and necrotizing fasciitis: a flesh-eating disease that attacked his feet, arms, and hand. Ian, a previously healthy 12-year-old kid, came to us in an extremely critical state and required intubation, sedation, dialysis, intensive nursing care, multiple surgeries to treat the areas in which the infection had settled, and close monitoring from our PICU team. After many days of Ian's team working incredibly hard to save his life, Ian turned a corner. I recall his parents saying in that moment that they felt Ian transitioned from "survival to recovery". Although he still had a long road ahead, Ian was, thankfully, on the mend. Ian spent the next month in the PICU before transitioning to inpatient rehab. Due to the complications from his disease, Ian had lost the skin and tissue in his arm, feet, and ankle and his toes had turned necrotic from the lack of blood flow to his feet. Ian required skin grafts to treat the lost skin and tissue and his necrotic toes were ultimately amputated on both feet. His stay at CHCO totaled 61 days and Ian endured fourteen surgeries in total.
Despite his difficult course, Ian rarely let anything get in his way. He was a fierce advocate for himself, was clear about how much information he wanted to know, communicated what he needed from staff, and often used humor to bolster his resilience. When Ian first saw his toes after they had turned black from the necrosis, he said "woah, I look like a Sith Lord", making a reference to Star Wars and breaking the ice for everyone who was worried about how he would respond. Ian took every day like a champ. During rehab, Ian rarely refused a therapy session and pushed through the hard days, knowing that working hard would get him back home with his family, friends and his dog Radar.
Throughout this incredibly stressful experience, Michael and Wendy were proactive and greatly advocated for Ian’s needs as well as those of his two sisters, Zoe and Piper. As a CCLS, I facilitated almost every intervention with Ian and his family: educated Ian about what was happening to his body, prepared him for surgeries and procedures, set Ian up with VR goggles (one of his favorite distractions during dressing changes), helped Ian create things on the 3D printer to promote normalization, educated Ian’s sisters about his hospitalization, prepared them for their first visit to see Ian in the hospital, and so on. Ian also was able to work with our incredible medical dog teams and music therapy to promote coping and to always have something to look forward to during his stay. Ian's story resembles what we see often everyday - that kids and teens are incredibly resilient and can handle the hard things despite what we may think or expect.
Two months after he was admitted to CHCO, Ian was discharged home! He now participates in physical, occupational and behavioral health therapies multiple times weekly and is seen in our outpatient clinics. Recently, I was able to see Ian during a clinic visit and was not surprised to see him taking life in stride. He has returned to school, to his friends, and hopefully soon to play lacrosse…all with a smile on his face. I ride for kids like Ian and for every kid in the hospital who deserves the best possible care.
Please consider donating to contribute to our Pediatric ICU so that we can continue to support the medical and psychosocial needs of children like Ian each day!