Experts in the field discuss the special needs of ventilator-dependent children.
When Katie Beckett was 4 months old, she contracted viral encephalitis and was admitted to St. Luke’s Hospital in Cedar Rapids, Iowa. She was partially paralyzed and unable to swallow, and St. Luke’s became her home. After she had been in the hospital for more than 2 years, her mother, a junior high school teacher, and her father, a lumber salesman, wanted her to come home.
Taking Katie out of the hospital would be costly for the family, however. While in the hospital, the young girl qualified for Supplemental Security Income, a welfare program run by the Social Security Administration. The rules stipulated that Katie must stay in the hospital to get her medical bills paid. If she was released, her parents? incomes would be counted against her, and she would lose the federal aid, even though home care would be much less expensive.
When Katie turned 3 in 1981, her family found a powerful advocate. President Ronald Reagan used her case as an example of federal over-regulation that was neither financially sound nor in the best interest of children or families.
Round-the-clock hospitalization was expensive–approximately $12,000 per month. Caring for Katie at home would cost $4,000 or less. Katie?s parents also felt that having their daughter at home would be good for her as well as the family.
On November 12, 1981, the Secretary of Health and Human Services Richard Schweiker waived the rules that forced Katie to stay in the hospital to get her bills paid. This was the birth of what has become known as the Katie Beckett waiver. It was an integral first step in getting kids who needed serious medical care out of the hospital and into their families? homes.
It was good news for many ventilator-dependent children. Families of these children have used Katie Beckett waivers to get their children back into their homes. As technology continues to evolve and health care companies work to reduce the amount of time patients are in hospitals, home care is often encouraged.
A Big Adjustment
Families of children on ventilators had specific challenges back then, and many of those hurdles remain: Who will teach the families to use the medical equipment that their children’s lives are dependent on? Where will the families acquire the ventilators?
Fortunate families live near institutions like Children’s Hospital in New Orleans, which pioneered a home-ventilator training program two decades ago; it continues to this day.
To become a candidate for home ventilation, a patient’s respiratory needs must fall between certain parameters. Their requirements can not be too high—a patient’s oxygen rate cannot be above a certain, hospital-determined limit. Nor can the breath rate required of the machine be excessively high.
The majority of family members who start the month-long training program have no previous medical training. For the first 2 weeks of the program, trainees are taught at the hospital under the guidance of multiple professionals. Then, while still at the hospital, the caregivers must go through a 2-week dry run. Although they are checked on daily, amateur caregivers have to do everything from regular suctioning of a tracheotomy tube to dealing with a ventilator alarm that goes off in the middle of the night.
“We hope that things will happen and they’ll learn a lot from those 2 weeks, so when they go home, it’s not as scary and they’re more prepared,” says Karla Donewar, BS/RRT-NPS, educational coordinator for the respiratory care department at Children’s Hospital.
Before the patient leaves the hospital, a staff member also finds a durable medical equipment vendor for the family who not only will supply the necessary technology, but also will provide the machines, on-call respiratory therapy care 24 hours a day, and monthly supplies of necessary disposable goods.
Initial setup costs range between $6,000 and $10,000. Most patients that are eligible for home care use volume ventilators. The state of Louisiana will okay the purchase of a laptop ventilator only for Medicaid patients who require pressure support, but this requirement varies from state to state.
Many patients get Medicaid benefits, but since reimbursements have been so bad, vendors are starting to refuse patients, according to Donewar.
“Right now, I have a little girl whose parents live in Alexandria, and she is an excellent candidate for home ventilation: her mom has done great with the training. I can’t find [a vendor] to take her. So, she sits in the hospital until someone decides to take her,” Donewar says.
When children are sent home, it is a whole new challenge in child care. Trainers at Children’s are candid about what families face: They tell them that it is going to be the hardest thing they have ever done, regardless of how strong the family is. Home care will affect everyone in the house. Other children often get less attention, and marriages are sometimes brought to a breaking point. For single-parent households, the challenge is even greater.
“Relief care is a big issue. [The families] will go home with in-house nursing, maybe 12 hour a day nursing, but what if the nurse calls in sick that day and you have a job? You can’t just call the neighbor next door and say, ‘Can you watch my kid?’ It has to be someone who is trained to take care of any type of situation,” Donewar says.
Children’s Hospital also has a ventilator-assisted child program (VACP) that follows its patients once they leave the hospital. It helps caregivers manage doctor visits, equipment problems, getting the kids back in school, and finding appropriate transportation. As well, it assigns a case manager to help the families identify and retain therapists.
The hospital also works to minimize the damage of the ventilators.
“We try to use the least amount of ventilation provided by the machine as possible,” Donewar says. “There is always the risk that you’re doing damage while you’re ventilating them.”
Beyond the dollars and cents advantages, sending patients home has benefits that are difficult to quantify. “Sending them home enables them to be what they can be with the nurturing and love and family activity that you get every day that you can’t get when you’re in the hospital,” Donewar says.
One of the problems for Medicaid patients who are sent home is that it is often difficult to get assigned a respiratory therapist. That has been the case since ventilator-dependent children were first being sent home in the 1980s.
Developmental Issues
Patricia Carroll, RN, RRT, PhD, worked with this population during that time. The registered nurse was a hot commodity because she was also a RRT. As an RN, she could be reimbursed by Medicare even though she was utilizing her RT knowledge. Many doctors agree that having an RT is integral to good care, but not all patients have regular access to one unless an RT is provided as part of their service plan.
“Many home care agencies will go ahead and provide the respiratory therapist as a consultant as part of their services and just fold it into the equipment fees,” says Carroll who is health careers coordinator at Maloney High School in Meriden, Conn.
Carroll, the author of What Nurses Know and Doctors Don’t Have Time to Tell You, is an expert in developmental strategies for ventilator-dependent kids.
“Respiratory therapists don’t necessarily get a lot of information about child development. Five-year-olds interpret things and understand language in a very different way than do 7- or 8-year-olds,” says Carroll. “If you’re giving therapy to a child, you don’t want to tell a toddler that he’s going to go on a stretcher … because he’ll think it’s a machine that is going to stretch him and pull on his arms and legs. If you say you’re going to start an IV, he’ll be thinking about the green plant [ivy]. ”
Carroll emphasizes that it is important for family members to remember that many of the emotional and developmental needs of ventilator-dependent children are similar to those of their peers. She says they will do best when their minds are stimulated by having someone read to them, by being able to listen to different types of music, by getting licked by a dog, or by being brought outside during a snowfall. Even the simple act of talking to a child is critical.
“Kids need these experiences so they can have normal brain development,” Carroll says. “Stimulation is what develops the brain. So if a 3-year-old is lying in a crib, with a trach in his neck, attached to a ventilator, and doesn’t have anything to look at, doesn’t listen to music, doesn’t have any stimulation, his brain is not going to continue to grow.”
In worst case scenarios, patients are seen as just that and those around them forget that there is actually a child there. “Because what so often happens is people have a hard time seeing past the machine to the child attached to it. That’s true in many cases in intensive care units where nurses and doctors and therapists forget to talk to people who are on ventilators. Maybe they’re in a coma, but that doesn’t mean they can’t hear,” Carroll says. “People forget that the child needs an evaluation and needs to work on learning and experiencing different sensations.”
Rest and Relaxation
One of the best places for new experiences? The outdoors. Throughout the country, there are a handful of camps that cater to kids who are ventilator dependent. They offer activities like fishing, tree climbing, swimming, and the very popular water gun fights. The Fresh Air Camp in Ohio offers all of these activities and makes sure that they are inclusive; everyone is capable of participating if they choose to. Anecdotal evidence shows that these campers are hungry for new experiences: when a camper saw a snake for the first time, he rolled toward it and was eager to touch it.
These camps also offer the benefit of allowing kids to be in a community of their peers who are able to understand many of their challenges. Outside of camp, they are often excluded from day-to-day activities. “They can’t go to sleepovers. They can’t go to a friend’s house to a birthday party unless they bring a caregiver,” says Diane Jereb, MBA, RRT, a codirector of the camp and pediatric supervisor at MetroHealth Medical Center. “[Camp] just allows them to be a kid; to go through the normal stages of development and separation and independence. These kids don’t have that.”
These camps take a lot of planning and manpower, however. The Fresh Air Camp has one 6-day, 5-night session for 25 campers. During the course of the session, between entertainers, food servers and preparers, and medical personnel, 300 volunteers are needed. This camp, and many like them, are always looking for volunteers. If you are interested, most have Web sites and contact information is available there.
Camp is often a respite for parents. Having a week off, they can spend time with their spouses or their other children. Doctors and medical workers who often see the kids only when they are sick, get to see their patients smile. For many, it is a good opportunity to see their patients as kids.
Mary K. Buschell, RRT, director of the Trail’s Edge Camp for Ventilator Dependent Children in Michigan, has seen the number of campers with spinal cord injuries drop since the camp began in 1990. In the early days, they made up the majority of campers, she says. But the use of steroids at accident scenes and in emergency departments has reduced the number of kids who are paralyzed.
Buschell believes that the laptop ventilator is the most important piece of equipment for ventilator-dependent kids. “It’s absolutely revolutionary in what it has done: it’s allowed kids to get out and about,” Buschell says.
She is also excited about the new ventilator in the works that is purported to be half the size of a laptop and weigh approximately 8 pounds. This could mean greatly increased freedom for ventilator-dependent children.
Stephen Krcmar is a staff writer for RT.
