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“I’ve learned so much that sometimes staff at CHEO will ask me if I am a nurse,” said Taylor Gervais. “I always tell them no, not officially, but I am Payton’s nurse.”
Taylor is three-year-old Payton Caron’s mom. Their family, including dad, Alan-Michael Caron, and sister Amélie are from Timmins, an eight hour drive northwest of Ottawa.
It is for little girls like Payton and busy parents like Taylor that two CHEO staff worked to improve care for kids with complex airways. Karen Perreault is a Nurse Practitioner in Otolaryngology (ENT, for short, being “ear, nose and throat”) and Julia Bokhaut is a Nurse Practitioner in Home Ventilation. Together, they knew that CHEO could make it easier and safer for families to laugh and play together, at home.
Payton was born with a double aortic arch — a relatively rare congenital cardiovascular malformation that can compress the trachea or esophagus and make it difficult to breath. She also has DiGeorge syndrome — the deletion of a small portion of chromosome 22 — which results in a myriad of symptoms. Payton spent the first six months of her life at CHEO with mom and dad regularly making the eight hour commute to be with her.
To treat her double aortic arch and keep her airway open, Payton had a tracheostomy tube inserted in the front of her neck. Her tube is also available for suction to keep her airway clear and ventilation to assist her with breathing, when required. After her first six months at CHEO, and before going home with her family, Payton was enrolled in CHEO’s Complex Airways Program.
“Going home was scary,” Taylor said. “We’re not just across the street from CHEO. Suddenly we were eight hours away from our safe place. Being part of the Complex Airways Program was reassuring. Especially with Payton’s airway. Karen and Julia are so special to us. They go way beyond anything we ever expected. When we got direct access to them with MyChart, it made things so much easier for me and so much better for Payton.”
Children like Payton typically receive care from multiple CHEO services. In Payton’s case, this includes the complex airways care team, which combines ENT, Home Ventilation, Respirology, and Speech Pathology. And, her DiGeorge syndrome also has her enrolled in the Complex Care Program — another multi-disciplinary service which provides care for Payton’s other health issues.
Karen and Julia knew that treatment for kids with complex airways could be made safer and more convenient for families. In 2019, they applied for funding and received support from the CHEO Foundation’s Bradley Endowment Fund to study how complex airways are managed at the Children’s Hospital Colorado in Denver.
“We wanted to make caring for kids with complex airway issues at home safer and easier for families,” Julia said. “These kids from all over eastern Ontario, western Quebec, and Nunavut. If we can keep them from having to visit a local emergency department or come in-person to CHEO any more than they need to, it’s really good for everyone.”
Prior to Karen and Julia’s work, these families would attend complex airway clinics in-person at CHEO. Each clinic would run from 9 am to noon and the families would be seen by each service, one after another. The meetings were long and communication between the services was not always complete. “It was like the telephone game,” Taylor said. “Sometimes you would hear different things from different people.”
In the midst of the COVID-19 pandemic, which was making travel even more difficult than usual, Karen and Julia reorganized CHEO’s care of complex airway kids around monthly virtual clinics — no more in-person visits unless they are essential. They brought all of the services together, simultaneously, so that each family meets with everyone at the same time. What had been a three-hour in-person clinic, is now just 30 minutes. And for families like Payton’s, nobody has to make an eight hour drive to attend.
Every two weeks, complex-airway families complete short questionnaire. If everything is going well, a family may not need to attend the monthly virtual clinic. For those that do, staff and medical staff involved in Payton’s care review the questionnaire so that care can focus on the family’s goals.
And, Taylor is in direct contact with Karen and Julia using MyChart two-way messaging. Day-to-day, these Nurse Practitioners can help Payton with most matters and keep her from having to visit the Emergency Department in Timmins.
“Having everyone together at the same time, with families is helpful to everyone,” Karen said. “Families appreciate the simplicity and the services are avoiding mixed messages. For instance, Home Ventilation may indicate that a child’s trach tube can be removed as they are happily breathing on their own but ENT knows that the trach tube has to remain until there is one more surgery to repair the child’s airway. This way, the family doesn’t get mixed message and understands why the trach tube has to remain a little longer.”
This new organization of the Complex Airway Program also ensures that community health-care providers like family doctors receive only one comprehensive communication about their patients, rather than separate messages from separate services. It also avoids double booking of services like CHEO’s Sleep Lab because the services can combine their tests in a single visit.
“Payton is full of life. She’s a busy little girl,” Taylor said. “Sometimes she has trouble slowing down when she needs that extra breath. But, she’s awesome. She can shut down her own ventilator and humidifier. She knows how to suction her own trach tube if fluids build up.”
This new virtual clinic was made possible by CHEO’s generous community. Through the CHEO Foundation, donations reach the hands of talented CHEO staff who constantly improve the care that matters to families. In the case of the Complex Airways Program, these donations funded international training and investment in the specialized equipment needed for virtual care.
Payton’s DiGeorge Syndrome still requires in-person visits to CHEO every three to six months. Her airway, though, is better managed day-to-day helping her stay home, busy, and developing.
As Payton herself said, “Thank you CHEO.”
