Eighteen years old. Eighteen years at SSM Health Cardinal Glennon Children’s Hospital. Now an adult patient, Michael Ball literally can’t remember a time – when the hospital, its people, or the disease that keeps him here – were not a part of his everyday life.
Michael Ball was born March 30, 2000, one month premature. Though his condition was stable enough for newborn discharge from the hospital, his mother Traci recalls the first seven months of his life being anything but stable. She says, “He wasn’t growing and developing right and consistently had trouble breathing.” After being sent home from emergency rooms all over town for seven months, Traci brought Michael to SSM Health Cardinal Glennon for evaluation. She pleaded with the ED physician, crying, “Please do not send us home until you find out what’s wrong with him”
At his first visit, Michael was only 10 pounds, unable to roll over, and had difficulty breathing. Traci explained to the team that over seven months of time, Michael had been given labels such as Failure to Thrive and Asthma. However, no one was willing to keep him hospitalized to implement a more comprehensive evaluation or plan.
Michael was admitted to the hospital on that visit and was diagnosed with cystic fibrosis (CF) within the week. He spent six weeks in the hospital, followed by four weeks in rehab for weight gain, physical therapy and parent training for airway clearance techniques.
Cystic fibrosis is an inherited genetic disease that changes the way the body produces mucus, sweat and digestive juices. Instead of smooth and slippery, these secretions are unusually thick and sticky in people with CF. This can clog up tubes and passageways in the body, causing damage to the lungs, digestive system and other organs. Screening of newborns for cystic fibrosis now happens in every state. It didn’t when Michael was a baby. As a result, the condition is diagnosed earlier than it has been in the past. CF has no cure but medication and therapy can help manage symptoms. To help manage symptoms, Michael and his mother have managed life within a cycle of four weeks out of the hospital, and two weeks in the hospital for the last 18 years.
Michael’s visits to the hospital are quite like a boot camp. His daily schedule of oral and IV medications, respiratory treatments, physical therapy, tube feedings and more, are all aimed at weight gain, airway clearance, strength training and leaving stronger than when he came in. Some of Michael’s biggest challenges with CF have been his limited strength and endurance for activities, a host of allergies to medications that require much planning and flexibility with his treatments, and the inherent barriers of chronic illness and hospitalization that prohibit traditional education and work professions. He admits to having a tight circle and that emotionally, he’s private. “I get angry sometimes, and upset,” says Michael, “but I try to make the best of it.”
“Knowing there’s no cure for my disease hit me really hard,” says Michael, “And forced me to accept some things that I’d never be able to have or do, there’s not many people who ‘get’ me, I have my close family, my Cardinal Glennon family, and an online community that has a few people who understand. Many of my friends were kids who spent a lot of time at the hospital, like me. I’ve had to watch many of them pass away during my 18 years here. That changes you.”
One SSM Health Cardinal Glennon staff member who has been a steady presence during Michael’s hospitalizations is Brenda Wilson, schoolteacher at the hospital’s Shining Star School. Plans for the dedication of the classroom setting were still in the works when Brenda began working with students. Michael submitted the “winning name” for the contest to name the school, and the Shining Star School was born. It is something the two of them will always share, and both the school and Michael are still going strong! Michael was a freshman in high-school when he first met Brenda. She worked with his homebound teacher and helped Michael compete his assignments while he was in the hospital. In his sophomore year, the school canceled Michael’s homebound teacher option, leaving Michael with options of on-line classes or homeschooling. Michael didn’t learn well with either of those options, but Brenda would continue to visit and work with Michael, printing out worksheets and keeping him interested in schoolwork. Entering his junior year, Michael refused to complete schoolwork, very frustrated with his illness and the challenges of trying to keep up. This didn’t stop Brenda from visiting and staying in touch though, or even just joking in the hallway of his hospital room. She knew his potential, and hoped that one day her consistency would benefit Michael. It has. Fast forward to current day,
Michael turned 18 years old on March 30, 2018 and the restrictions imposed by his illness have convinced him that his best chances for employment are those where he can work from home and use computer skills. He has a goal of taking the High School SAT exam(s) and attending community college. Brenda continues to work with Michael during his hospitalizations, running off practice exams, and coaching him all the way.
Brenda is just one of Michael’s favorites here at SSM Health Cardinal Glennon. He has literally grown up among many of the nurses, doctors, therapists, dietitians, Child Life Specialists, housekeepers, greeters and more that he quietly calls his family. He has fond memories of late night board games, water fights and video games with his nurses and therapists, and custom food menus created for him by his dietitians. He says his own family and his Cardinal Glennon family are what has helped him accept and own his illness. While they have moved from all around the area the last 18 years…they will always make SSM Health Cardinal Glennon their home.