Home Is Where The Lungs Are

Vol. 19 • Issue 8 • Page 14

The Shellenberger family of Douglassville, Pa.: (from left) Faith, David, Natalie, and Karen. Born premature, Natalie spent nine months in a NICU before she came home with a ventilator. Her parents feel fortunate to have had the support of the Pennsylvania Ventilator Assisted Children’s Home Program based in Philadelphia. photos by Jay Wiley

David Shellenberger had not slept well since the time his wife, Karen, was admitted to the hospital due to pre-eclampsia and eclampsia of pregnancy complications. A month later, their daughter, Natalie, was born Oct. 12, 2007, at 25 weeks gestation and a mere 1 pound, 3 ounces and 11.5 inches long. He did not think his worried sleep could get any worse, but a year later it did.

Natalie’s major medical issues in the NICU at The Children’s Hospital of Philadelphia (CHOP) were related to her prematurity and bronchopulmonary dysplasia. She received a tracheostomy at 6 months old, and three months later was discharged home with a mechanical ventilator.

The Shellenbergers transformed their living room to mirror the NICU. They labeled all the supplies – from cotton swabs to spare tracheostomy tubes and ties – and modified Natalie’s crib to accommodate the ventilator and accessories. The night before Natalie was to see her Douglassville, Pa., home for the first time, David and Karen felt prepared but anxious about all the things that could go wrong.

“I remember thinking, ‘How are we going to be able to do this together, to actually be able to have Natalie here?'” David said. “While we were going to have nursing care 24 hours a day, the immediacy of being able to have a physician, a respiratory therapist, a nurse practitioner, a PA, and anybody else at your beck and call now was gone. Going down that morning to pick her up, I was sick to my stomach; I was happy; I was sad. It was the most amazing amount of emotions.”

More families than ever before are facing these same challenges as they provide home care for their children who are dependent on mechanical ventilation, said Deborah Boroughs, MSN, RN, administrative director of the Pennsylvania Ventilator Assisted Children’s Home Program (VACHP) based in Philadelphia. Infants are living with some significant diagnoses that they would not have survived 20 years ago.

Advances in medical care now allow children with certain congenital airway anomalies to be cared for immediately. Some with cardiovascular diagnoses need ventilator support for a few years while they undergo various stages of surgeries. Premature infants who develop chronic lung disease depend on mechanical ventilation during their early years, which allows time for their lungs to remodel.

In addition, manufacturers have created home care ventilators that are more user-friendly and reliable. Once the size of dishwashers, modern versions are closer to laptops, and their portability makes the ventilators less daunting.

John J. Downes, MD, medical director of VACHP, said it is difficult to determine an accurate number of children who require mechanical ventilation at home in the U.S., but he estimates there are between 4,000 and 6,000 patients.

“So we are not talking about a big public health problem,” Dr. Downes said. “But we are talking about a pretty severe situation if it happens in your family.”

Prep work

Preparing to care for their technology-dependent child at home can be an intimidating time for families. At CHOP, the Shellenbergers received extensive training at the bedside from the nurses and RTs, watched videos to reinforce their education, and then demonstrated the skills repeatedly. They performed nerve-wracking trach tube changes and troubleshot ventilator alarms, for example. One of the most important lessons was how to assess Natalie for signs of respiratory distress.

“Regardless of what the ventilator is doing – yelling, screaming – look at Natalie,” David learned.

While on some days in the NICU the Shellenbergers would have preferred to have been just mom and dad, not rookie medical caregivers, the therapists and nurses kept them focused. They always warned David and Karen that an emergency situation likely would arise at home, and the professional medical staff they hired might not respond correctly.

It was well over a year since Natalie came home when the prediction came true. The overnight home care nurse’s screams woke the Shellenbergers at 4 a.m. They rushed downstairs to Natalie’s bedside where they found her completely blue. No pulse or SpO2 registered on her pulse oximeter. Based on the training they received, her parents immediately called 911 and began to change her trach, start CPR, and perform manual ventilation. Natalie recovered, but her father’s ability to sleep soundly since then has not.

David credits their effective emergency response to all the weeks of practice in the NICU. “We were able to save our daughter,” he said. “What we didn’t do is drop the ball. We were able to work through everything.”

Such a success story reinforces the importance of the caregiver education that Kathy Barnum, RRT, respiratory care clinical specialist, pediatric home ventilator program, emphasizes at University of Michigan C.S. Mott Children’s Hospital, Ann Arbor.

Families spend as much of the day as possible with their child (a minimum of 20 hours a week) on the stable ventilator unit floor. Barnum encourages them to jump in and do all the care for their babies. Once they are comfortable with trach care and suctioning, Barnum tackles ventilator management. She asks parents to tear apart a ventilator and put it back together. They learn what the ventilator’s settings and alarms mean. After they have gained some confidence, Barnum sends them on a road trip to the hospital cafeteria or gift shop with their mechanically ventilated child in a stroller.

“We want the parents to take the child out of their room as much as possible so they can become accustomed to loading up all the equipment and caring independently for their child,” Barnum said.

Next, the child and her family caregivers stay overnight in a hotel that is attached to the hospital. They can call the ventilator unit with questions or 911 in an emergency. The purpose is to get the parents used to not having medical personnel always around. “A lot of them say it’s a very eye-opening experience,” Barnum said.

Home care boot camp

Once parents are home, they often find they know more about how to care for their child and how to use a ventilator than the home nurses assigned to their case. VACHP advocates strongly that a child using home mechanical ventilation receive 16 hours of nursing care daily, seven days a week. But finding a nursing professional who has a high level of airway management and resuscitation skills and who also is a good personality match with the family is not easy, Boroughs said. While families desperately want the professional nursing coverage, they must establish a level of trust with essentially strangers hired to stay in their homes and keep their children alive.

In the VACHP program, the rate of accidental, preventable deaths is about 10 percent. “A lot of times, it’s related to inadequately trained
caregivers,” Boroughs said.

She recalled the story of an adorable little boy born with cardiac problems who had a poor prognosis. His mother brought him home and arranged for hospice care. Against all odds, the child survived. They lived in low-income housing in Philadelphia and had a hard time finding good nurses to come to their home.

One afternoon, the mother went to the store to buy supplies for his second birthday. While she was gone, the boy became decannulated, and the home care nurse on duty panicked. Instead of putting his trach tube back in, she picked him up, took him outside to “get some air,” and started screaming for an ambulance. The boy was dead on arrival at the hospital a half mile away.

How do you prevent scenarios like this from happening? VACHP began a comprehensive ventilator training program eight years ago to raise the caliber of home care professionals. It is based on learning the complex anatomy and physiology of the pediatric respiratory system. After mastering these theories, the students get hands-on lab experience. They use the ventilator circuitry and apply the settings.

“Many of the errors in home care are because the nurse doesn’t actually understand the concept of mechanical ventilation,” Boroughs said. “If a ventilator alarms, the nurse hits the reset button and prays the computer straightens itself out. We want them to know how to prevent the problems before they lead to an alarm.”

VACHP offers the four-day, 32-hour course twice a year, and they educate nurses, RTs, and durable medical equipment providers from all over the country. When they go back to their facilities, Boroughs encourages them to share their new knowledge. “It has evolved into a
train-the-trainer program,” she said.

Expanding the workforce

While it is absolutely necessary to have highly skilled health care professionals providing home ventilator care, VACHP often must convince insurance companies to pay for the 16 hours of nursing care daily because it is seen as an expensive endeavor. In some states, it is not unusual for only eight hours a day to be covered by insurance. When you factor in labor, equipment, and supplies, costs can reach $200,000 per family a year, Dr. Downes said, yet it is far less than a patient stay in an ICU in a children’s hospital.

It would be less expensive to hire home care RTs, but the pool of professional caregivers primarily is limited to nurses. Medicare Part B does not recognize RTs or the services they provide in the home care setting. The American Association for Respiratory Care helped introduce legislation (HR 1077 and S 343) in Congress to change the Medicare statute to include a new and separate benefit for RT services that can be conducted without the direct supervision of a physician.

Supposing this legislation passed, therapists could be a readily adaptable adjunct to the home care workforce, Dr. Downes said. “One of our major problems is the shortage of qualified home care nurses. And respiratory therapists are particularly skilled at the airway and mechanical ventilation, which are the key issues that need to be addressed most of the time.”

Howard Panitch, MD, director of the Technology Dependence Center at CHOP, also supports using RTs to provide additional home care for mechanical ventilation. He went a step further to suggest that one day laypeople who undergo extensive training, such as that provided by the VACHP program, could demonstrate their proficiency and be recognized by insurance companies as qualified caregivers.

“Given the shortage of skilled professionals and given the fact that they represent the most expensive component of home care for this population, we need to be creative,” Dr. Panitch said.

He pointed to a recent study that tested how nurses and parents would respond to tracheostomy emergencies or ventilator malfunctions.1 Having professional training did not pose an advantage in the nurses’ scores. “This speaks to the fact that you can train people who don’t necessarily have health care backgrounds to be proficient at providing care in the home.”

Patient advocacy success

Navigating these issues would be less traumatic for families if more patient advocacy programs like VACHP were available on the state level. Since 1979, Dr. Downes and his staff have successfully helped 1,000 families solve problems with insurance coverage, home care staffing agencies, DME providers, and schools. VACHP started out with five patients and a $100,000 budget; today, 250 are enrolled, and it receives $1.1 million, most of which pays for respite care. The program is unique in that it is funded by the Pennsylvania Department of Health.

“We keep statistics that prove the value of keeping these kids out of hospitals, keeping families intact, and helping parents to stay employed because they’re not losing work due to absenteeism,” Boroughs said.

Harder to track are the developmental and quality of life benefits that home care offers. “Over half of these children eventually will be liberated from mechanical ventilation,” Dr. Downes said. “You don’t want a child who is severely handicapped developmentally because of the lack of a normal family life or emotionally handicapped and then have them try to fend their way through school and eventually through society. Rather, they should have as normal of a developmental process as possible. And that is what any one of us would want for our child.”

Over time, the Shellenbergers realized they needed to encourage Natalie to do the things that any other child would do. They began to think of the ventilator as an extension of Natalie, as opposed to her being hooked up to a machine.

“Natalie is doing tremendously well now,” Karen said. “She is in many ways a very normal 2.5-year-old; she just has a little bit of extra equipment.” On her way toward decannulation, Natalie successfully underwent tracheal reconstruction surgery in May.


1. Kun S, Davidson-Ward SL, Hulse LM, Keens TG. How much do primary care givers know about tracheostomy and home ventilator emergency care? Pediatr Pulmonol. 2010;45(3):270-4.

Contact Sharlene George at sgeorge@advanceweb.com.

About The Author