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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."
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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.
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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.
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