Nurturing Pediatric Lives
dFrom May to October of 2023, the lives of nine children were transformed when they were discharged from ventilators.
THE RESPIRATORY CARE CENTER: NURTURING PEDIATRIC LIVES
While healthcare facilities in larger Kentucky towns may be well known for sophisticated inpatient pediatrics care, the Respiratory Care Center at Rockcastle Regional Hospital has been transforming the lives of pediatric patients for years, and now more than ever.
At any given time, the Respiratory Care Center is home to a half dozen or more patients who haven’t yet reached their third birthday. They are ventilator dependent, unable to breath on their own.
This year, the facility has been home to more pediatric patients than usual, and from May until October, nine of those patients were discharged, often returning to a home environment after successfully being weaned from the ventilator.
“Each time a patient is weaned, it’s a transformative event in that individual’s life,” said Steve A. Estes, president and CEO of Rockcastle Regional.
And it is a particularly special moment for those small children and their families.
Karen Saylor, M.D., attending physician for the Respiratory Care Center, recalls a recent scenario in which a child was successfully weaned.
“The patient had been prepared by our staff,” Dr. Saylor said. “The aides had gotten her all set and she was ready to go. Then, here comes mama with her bag. She has some particular hair bows in it. She puts them in like she wants. And in that moment, the child changed from our patient to mama's girl. And she went home with her.”
Individualized, state-of-the-art care
Built in 1956, Rockcastle Regional Hospital is an acute care facility that offers inpatient and outpatient services to individuals in Rockcastle and surrounding counties.
Since 1982, the organization has also offered specialized care for patients who are unable to breathe without the assistance of a mechanical ventilator. That facility, known as the Respiratory Care Center, has grown to be one of the largest of its kind in the nation, treating patients from throughout Kentucky and beyond.
Whatever the reason for the need for mechanical ventilation, the Respiratory Care Center’s goal is to eliminate that need. Using an individualized and multi-disciplinary process that starts months before a patient’s stay, the organization’s team of experts wean roughly half of all admitted patients from ventilator care.
The facility utilizes state-of-the-art equipment, including advanced MRI-compatible ventilators, and integrates cutting-edge technology to ensure patient safety. The center provides care that is tailored to individual needs, treating an array of rare and life-threatening conditions.
A visiting pulmonologist once said of Werdnig-Hoffman disease, a genetic neuromuscular disorder characterized by loss of motor neurons and muscle atrophy, “in 20 years of practice, I have never seen a patient with this, and you have two of them.”
“Our organization has a unique capacity to apply specialized ventilator care for patients with an incredibly wide range of uncommon conditions,” Estes said. “It’s part of what sets us apart from other facilities.”
The care provided at the Respiratory Care Center extends far beyond physical health.
A Personalized Program
The journey toward independence from ventilators begins long before a patient is admitted. A comprehensive evaluation, involving input from specialists such as pulmonologists and cardiologists, sets the foundation for a personalized weaning program. This intricate process involves gradually reducing ventilator support over weeks or months, guided by the patient's specific medical condition.
“These children will have multiple specialty appointments, and we coordinate all those,” Dr. Saylor said. “Plus, the children receive physical therapy, occupational therapy, and speech therapy,” Dr. Saylor said.
Communication with parents is key. Although the facility’s visiting hours are 8 a.m. to 6 p.m. daily, parents often live a significant distance away and can’t be by their child’s side. Regular FaceTime calls made by the social services staff ensure that parents can keep track of their child’s progress.
Families or guardians may call the nurses’ station anytime, day or night, to check on their loved ones, and they are given the number of a social services worker’s direct line so they can call anytime with any concerns or issues that might arise. They may also leave a message for the doctor to call them directly. The care provided at the Respiratory Care Center extends far beyond physical health. The center emphasizes holistic development, offering educational opportunities in partnership with Rockcastle County schools. Through tailored teaching methods and assistive technology, patients receive an education, promoting a sense of normalcy in their lives.
Additionally, social services staff organizes personalized activities, fostering emotional and social growth. The center's dedication to enhancing the quality of life for these children is exemplified by its efforts to integrate them into social environments, ensuring they are well-prepared for life outside the facility.
‘…like a part of us is leaving with them’
The discharge process is meticulous. Families are equipped with the knowledge, training, and equipment necessary to care for their child at home. From medication administration to CPR training, the families receive comprehensive support. Social services staff ensures seamless transitions, arranging home healthcare, connecting families with outpatient therapy, and organizing transportation when needed.
Discharging a child from the Respiratory Care Center is a significant milestone, yet it's bittersweet for the staff. While there's immense joy in seeing a child move towards a more normal life, there's a sense of loss too. The bonds formed between the staff and the patients are deep, making their departure akin to a part of the family leaving.
“We’re sad when they get discharged, but we're also happy,” said Sara Robinson, RN. “It feels like a part of us is leaving with them. But we're really happy that they get to go home and live a more normal life.”
Chief nursing officer Tammy Brock said helping these children gain independence goes to the heart of the organization’s mission.
“It’s incredibly rewarding,” Brock said, “knowing that our team plays such a pivotal role in creating a better future for these children.”