Success stories aren't easy to come by in the home ventilator field, but Cynthia Gray has many — and the number is growing. The vice president of respiratory clinical services for Canadian Valley Medical Solutions in Oklahoma City is part of a team that has literally been a lifesaver for children and adults on home ventilators.
Gray, together with James Royall, M.D., a pediatric pulmonologist with the University of Oklahoma Health Sciences Center Children's Hospital; Yolanda Sellers, a registered respiratory therapist; and Julia Vanna, a nurse practitioner, started a program three years ago that teaches caregivers how to deal with patients on ventilators and the equipment itself. The results have been dramatic.
Canadian Valley serves 25 patients on home ventilators, many of them children. Five of the young patients have been completely weaned off the ventilators, and Sellers notes that about half are off their ventilators during the day for at least a couple of hours. Children whose prognosis was grave have sometimes progressed to the point where they are running around a ballpark and going to school.
“It's incredible,” Gray says.
It's certainly a far cry from the days when patients on ventilators usually didn't even go home or, if they did, had no hope of ever getting off the machine.
“I remember when kids went home on ventilators and just stayed there. They never went out, they never got off [the ventilators],” Gray says. “We have mothers who take their children to the park on ventilators and to Wal-Mart. They know what to take, what to do. It's given them a life.”
To make the program work, Royall explains, “we had to partner with an agency that had the experience [of working with ventilator patients].” He found that in Canadian Valley, where Gray's experience in dealing with patients on ventilators was enhanced by another factor: her belief that educating caregivers ultimately helps the patient, cuts back on emergency room visits, pares costs of caring for ventilator patients, improves profits and generates positive outcomes.
Working with Gray, Royall says they basically “mimicked other programs” to devise a comprehensive training curriculum that begins when the patient is still in the hospital. “Basically, you're asking people to create a mini [intensive care unit] in their home, and they don't have any medical knowledge,” he explains. “You have to educate them. But people can do it, and it is something that will work as long as you are very organized and have every aspect of what they need to know covered.”
That's where Canadian Valley excels, Royall believes.
“We spend a month to six weeks working with the patient and the family while they are in the hospital,” Gray says. “The family begins with intensive hands-on education with the ventilator. They must know not only how to change the circuit, but they must know what every knob means, what to do in case of an emergency and when to seek other sources of electricity when the storms of Oklahoma begin to blow.”
Sellers evaluates the patient's home to ensure it is a safe environment and also assists with any reorganization of the home or equipment that is needed. Working with the family for at least an hour a day, five days a week, Sellers goes through a book about the ventilator, explains useful terms and makes sure they have complete knowledge of the machine. “I like them to know the vent inside and out,” she says.
Since the home ventilator is being used in the hospital, Canadian Valley supplies it without reimbursement, Gray says. “You have to start the education while they are in the hospital … It's a personal commitment on our part — and it's a very costly commitment — but it's costly on the front end, not on the back end. When everyone else is going out [on calls] at night, we're not doing that.”
Vanna and her staff work with the patient and the family on the nursing aspects of care, such as changing the tracheotomy tube, suctioning and assessing the patient. Patients and their caregivers must be able to transport three times without assistance before they go home. They also must be able to check off every item on a six-page list. “We test, retest and reevaluate continually,” Gray says. “If we ever notice there is a problem and the patient's family did not understand, we educate all over again.”
While caregivers are at first nervous about being in charge of the machinery, “they're fine after they understand what everything means and does,” Sellers says.
“The families feel empowered,” says Gray, noting that even when the electricity goes out, Canadian Valley is seldom called to troubleshoot.
“Because the education is extensive on the front end, we haven't had the problems other [home medical equipment] dealers have had,” she continues. “That's true of apnea monitors, [continuous positive airway pressure] devices and so on.”
Gray credits the program's success to the team. “It's the total team — not one single person can make it work,” she says. “Everyone has to buy into it.”
Another Success Story
Baby Boy Smith was in the neonatal intensive care unit for 10 months. His prognosis was grave, “with no expectations for real development anticipated.”
Then James Royall, M.D., came aboard as pulmonary managing physician. He changed ventilator settings, increased the respiratory rate and made other modifications to the child's care. With the help of nurse practitioner Julia Vanna, and the respiratory team at Oklahoma City-based Canadian Valley Medical Solutions, the family was educated to take care of the baby on a ventilator, and he was sent home.
“Over the next six months, the child developed a personality, oxygen was decreased to one-and-a-half liters, X-rays began to improve,” reports Cynthia Gray, vice president of respiratory clinical services at Canadian Valley. “Four months later, Baby Boy Smith is on a half-liter by aerosol with a trach mask used during daytime hours and on the ventilator at night. Blood gases are normal with apparently normal mental capacity. Dr. Royall expects to take him off the ventilator [soon]. The mother expects him to start kindergarten on time and without a tracheotomy.”
