“We love it!” Nia Phillips, 7, and her mom, Tressy, said in unison when asked about CHoR. They’re especially big fans of our pulmonary team, having worked closely with these specialists over the past two years to address Nia’s serious and sometimes life-threatening asthma attacks. “They’re just a wonderful bunch in that pulmonary clinic,” Tressy says fondly.
Dr. Michael Schechter is Nia’s pediatric pulmonologist. He specializes in caring for children with lung diseases and is the director of our You Can Control Asthma Now (UCAN) program. This unique, grant-funded program brings together doctors, nurses, respiratory therapists and social workers from our pulmonary team to help children with asthma gain control of their symptoms so they can live active, healthy lives. Since UCAN began in 2015, the number of asthma-related hospitalizations and trips to the emergency room for patients in this program has decreased by an overall average of more than 50 percent. Nia’s results have been even more significant.
Nia’s family first learned that she had asthma when she was 2. At the time, she was having breathing difficulties that continued to worsen. She was also having flare-ups of eczema (skin rash), which is often seen in children with asthma. Concerned about both issues, they took Nia to her local pediatrician near their home in Petersburg.
Asthma affects the bronchial tubes which are the pathway for air to enter the lungs. They begin in the windpipe and branch out tree-like into both lungs. The tubes are typically wide open so air can move in and out easily, but in individuals with asthma, inflammation, irritation and swelling – often allergy-related – are always present inside the tubes. “When someone with asthma is exposed to certain triggers, a worsening occurs and the bronchial tubes become inflamed even more,” Dr. Schechter remarks. “The muscles around them also get really tight and an increase in swelling occurs. The narrowing that results inside the tubes is what causes the symptoms that people think of as an asthma attack.”
Coughing, wheezing and difficulty breathing are all common symptoms. “You have to force air through a narrower passageway and that causes a wheezy noise and makes breathing difficult,” Dr. Schechter explains. For some, the breathing issues and tightness can rapidly worsen to a life-threatening level and Nia had a tendency to fall into this category.
Nia’s family tried to take precautions to limit her exposure to triggers, but her symptoms proved difficult to manage without specialized support. Triggers can include colds, allergies and even smells and changes in the weather, so it is near impossible to limit exposure completely. Tressy says it was not always easy to recognize if Nia was having an attack “or just wasn’t feeling good” and her attacks could become severe quickly, so she often needed to be hospitalized.
Twice Nia was flown by a Medivac helicopter from her local hospital to CHoR when she was having extremely serious issues – once when she was in kindergarten and once the year before – as her local hospital did not have the kid-size equipment and specialists she needed. The second time, as they waited for the ambulance to arrive at their home, Nia passed out in Tressy’s arms while Tressy was giving her a breathing treatment. “Her eyes rolled back and she collapsed like a rag doll,” Tressy says.
Both times, Nia’s breathing became so difficult that she needed a tube inserted into her windpipe to assist her breathing during the helicopter ride. Her second stay at CHoR lasted nearly three weeks as it took that long for Nia’s bronchial tubes to open up enough to allow her to breathe without support and safely return home.
No bad episodes
Dr. Schechter and the newly formed UCAN team became involved in Nia’s care during her second hospital stay at CHoR. They conducted a series of specialized tests to figure out exactly what was triggering her severe asthma and how best to control it. Several different anti-inflammatory asthma medications were tried until the best one was found for her, and her parents were taught how to monitor her breathing on a daily basis, how to tell when she was beginning to have an asthma attack, and what to do early on to prevent her from getting so sick when an attack began.
Nia now takes daily “controller medications” which helps control her asthma symptoms and avoid attacks by reducing the inflammation in her bronchial tubes that makes them more susceptible to narrowing when exposed to triggers. She has monthly injections of another medication which reduces her body’s response to allergens and allows the controller medication to work better. She also sees an allergist at CHoR who helps with treating her eczema.
Since starting this regimen in 2016, Nia has been able to wean off the oral steroid medications she had required to battle the breathing-related effects of her attacks. As she transitioned, Ginger Mary, the UCAN team’s nurse practitioner and certified asthma educator, checked on her frequently monitoring how the new medications were affecting her and how she was doing as other medications were reduced. Ginger says Nia has been a “bright star” throughout, sharing her “bubbly personality that draws people to her. “
Nia sometimes still needs medicine that immediately relaxes her bronchial tubes for a few hours of symptom relief but according to Ginger, she’s using this “rescue medication” much less frequently. Tressy is thrilled to share that Nia has not had any had “bad episodes” – no hospital stays or ER visits – since she’s started the controller medications.
Nia comes for monthly appointments for injections and a breathing test to see how her lungs are doing, but her UCAN team is always there for her and her family. They can call any time of the day or night and the team will talk through what’s going on and the medication adjustments or other steps needed to provide immediate help. “I really appreciate that you don’t have to wait to get answer,” Tressy remarks. “If we see something that concerns us we call right away.”
The team monitors Nia’s use of rescue medication, missed school time due to flare-ups, concerns affecting daily care and other aspects of her asthma management to pro-actively determine if changes are needed. “It’s been a wonderful experience working with them,” Tressy says. “Dr. Schechter and Ginger put me at ease about her asthma, really listen to my concerns, and are always patient in explaining what’s going on and her medications. They also talk to Nia – she is the patient and she explains it better. I really like that they listen to her.”
Actively enjoying life
Managing asthma may always be part of Nia’s life, but she remains characteristically upbeat. “It’s OK to have an illness as long as you still know you’re beautiful,” is her heartfelt advice to kids facing similar issues. “God made us all different.”
Along with dancing and reading, Nia lists vacations among her favorite things to do. She’s looking forward to a family trip to Myrtle Beach this summer, and with her asthma under control she can more actively enjoy this experience. “Asthma is controllable,” Ginger stresses. “There are so many different medications we can share with families so kids can be out there and playing every day.”
Having an expert team there 24/7 is so important too – especially for a child who has faced such serious medical issues. “They make me feel safe,” Nia says when describing what she likes best about her CHoR team. Her simple statement shares so much about this program and its impact on her life.