Three-year-old Ainsley Hooper’s face wrinkles with concern.
She’s looking at photographs of herself as an infant—during the months she spent in the Pediatric Cardiac Intensive Care Unit (PCICU) at Monroe Carell Jr. Children’s Hospital at Vanderbilt.
She doesn’t like to see these photographs, says her mother, Kim Hooper.
“Look mama, I have a boo-boo right there,” Ainsley says, pointing at the bandage covering her chest.
“It was getting better, wasn’t it?” Kim says reassuringly.
Indeed, after two open-heart surgeries to correct congenital heart defects and some touch-and-go times in the PCICU three years ago, Ainsley is healthy. She spots a photo where her bright blue eyes are wide open.
“Look, I waked up; see, I waked up,” she says with a broad smile.
From wheezing to heart surgery
It was July of 2011, and Kim and Andy Hooper’s 3-month-old daughter was wheezing.
At their family medicine office, the physician they saw—Ainsley’s family doctor was on leave—sent Kim and Ainsley home without a diagnosis.
Kim called Andy, a nuclear medicine technologist at the Vanderbilt Heart Clinic in Columbia, Tennessee.
“I could hear Ainsley wheezing, and I asked one of the nurses at work to listen,” Andy says. The nurse thought it sounded like RSV and suggested they go to the Children’s Hospital’s Emergency Department.
“The whole drive up there, we thought they would laugh at us and send us home,” Kim recalls.
They didn’t laugh.
Ainsley’s oxygen levels were low, but a breathing treatment and a chest X-ray were inconclusive. The Emergency Department team decided to admit her for the night for additional tests.
By the end of the evening, Ainsley was in the PCICU and two days later, she was having heart surgery.
Critical heart care
It’s mid-morning on a Wednesday in the PCICU. The unit is calm, with a background buzz of activity and conversations.
Near the nurse’s station, a bedside nurse and a nurse practitioner discuss a patient’s care. Nearby, a pharmacist, social worker, nephrologist and nurse practitioner consult. And just outside the door of one of the glass-fronted rooms, a team of providers talks with a patient’s parents.
“It’s a constant” to see groups of providers talking through patient care issues, says John David Hughes, RN, BSN, manager of Patient Care Services for the PCICU. And this communication—at all stages of a patient’s stay—is key to the unit’s success, he adds.
The 18-bed PCICU specializes in the care of babies, children and adolescents who are critically ill with heart disease. Patients in the PCICU may have had heart transplants, life-threatening heart rhythm problems or surgical repairs of congenital heart disease—congenital heart defects are the most common birth defects, affecting one in 100 babies. They may require ventricular assist devices or extracorporeal membrane oxygenation (ECMO), which provide cardiac and respiratory support outside the body.
“We provide critical care services that are unique to Middle Tennessee and beyond,” says Andrew Smith, M.D., MSCI, MMHC, assistant professor of Pediatrics and Anesthesia and medical director of the PCICU. “As the pediatric population of our region has grown substantially, so too has the demand for our specialized care.”
In recent months, the average occupancy of the unit has approached 90 percent consistently, Smith says, which presents a challenge to ensure that “we continue to meet the expanding demands of children with critical heart disease in the region.”
A planned four-floor expansion at Children’s Hospital will include additional critical care space to meet this growing need. Construction of the new tower, to be located atop the existing hospital structure, will add 160,000 square feet and is slated to begin in 2015.
“Having our resources expanded is key for us to be able to safely provide our specialized care to children with heart disease on a larger scale,” Smith says.
Approximately half of the surgical admissions to the Children’s Hospital PCICU are babies under 1 year of age (20 percent are less than 1 month old), most often following surgery to repair a critical congenital heart defect.
Ainsley Hooper was one of these babies.
A rare heart defect
Ainsley had a rare congenital heart defect called ALCAPA —anomalous left coronary artery from the pulmonary artery.
The coronary arteries, which provide the heart muscle with oxygen-rich blood, normally branch from the aorta as it leaves the left side of the heart.
In children with ALCAPA, the left coronary artery comes instead from the pulmonary artery and supplies the left side of the heart with oxygen-poor blood. This defect can lead to heart failure.
Surgery is required to disconnect the left coronary artery from the pulmonary artery and to reconnect it to the aorta. Ninety percent of babies who do not receive treatment die in the first year of life.
Bret Mettler, M.D., assistant professor of Cardiac Surgery, performed surgery on Ainsley two days after she came to the Emergency Department.
“Obviously, we were in shock,” Kim Hooper recalls. “But it’s so wonderful in the PCICU. A social worker checks on you right away and the nurses call for assistance if they see that you are having trouble.
“We had amazing nurses, and when it was really bad and scary, we had a nurse in the room with us all the time.”
Because Ainsley needed ECMO support, an ECMO technician was also in the room around the clock checking the lines and monitoring Ainsley’s condition, Kim Hooper says.
Hughes, who was a bedside nurse in the PCICU for four years before moving into a leadership role, says “our nursing team works ridiculously hard. They deal with really tough medical problems and are so dedicated to these patients. The nurses and provider team deserve all the credit for the amazing work we do in this unit.”
Calling Dr. SPOC
Over the last few years, the PCICU has had a focused effort on improving communication and standardizing care.
The results are impressive and include: reduced length of post-operative stay by a full day, reduced times to lifesaving ECMO cannulation, more than one year free of serious hospital-acquired infections and reduced rates of unplanned extubations (when airway tubes become dislodged).
“Care in the PCICU involves so many different moving parts, and it is essential that they work well together,” Smith says. “At the end of the day, delivering this type of care is a team sport, and facilitating team member communication in whatever way we can has definitely led to tangible benefits to the patient.”
Smith instituted a monthly morbidity and mortality conference that includes representatives from all the “players” on the team including multiple physicians (surgeons, anesthesiologists, cardiologists and intensivists), nurse practitioners, bedside nurses, respiratory therapists and support staff.
“Together, we review specific cases, unit performance indicators like our rates of central line infections or cardiac arrests, and discuss different ways we can improve our overall process of care,” Smith says.
Another initiative has been the implementation of “Standard Plans of Care”—called SPOCs.
PCICU leaders reviewed cases from the past five years to develop “milestones” for patients—such as being removed from the ventilator and stopping medications that support the blood pressure. The time to each milestone varies depending on the complexity of the surgical procedure.
“These milestones give not only us as providers, but also the families, a general idea of what to expect and when to expect it,” Smith says. “It’s a very stressful and scary time for the child and their family, and anything we can do to facilitate understanding of expectations is crucial.”
Both Kim and Andy Hooper were impressed with the shared information.
“They do an excellent job of explaining everything so that it can be completely understood,” Kim says. And because Andy had work-related knowledge about the heart and cardiac measures—”I knew just enough to be dangerous,” he jokes—he often got to look in detail at Ainsley’s scans and reports.
“We take pride in including families in rounds if they want to be included,” Hughes says. “There’s always time carved out at the end of rounds to ask the family if they have any questions.”
A large whiteboard hangs in the hallway of the PCICU— visible to anyone who walks by.
It’s a quality indicator board, “where we keep up with the days in between infections or other adverse events,” Hughes says.
The board includes the running tally—and the unit’s record—for days since a central line-associated bloodstream infection (CLABSI), a catheter-associated urinary tract infection, ventilator-associated pneumonia, ECMO started during CPR (the goal is to start ECMO before CPR is necessary), and an unplanned extubation.
“This is something we take a lot of pride in,” Hughes said. “In the case of CLABSIs, for example, every one of our patients has a central line, and some patients have them for months and months, so the days in between CLABSIs is a really big deal for us. I think our results are a testament to the fact that our nurses pay attention to detail.”
Other quality improvements have included standards for the post-operative patient handoff to the PCICU, ECMO cannulation, feeding to improve nutrition, airway management and blood utilization. Critical care physicians Patrick O’Neal Maynord, M.D., and Gina Whitney, M.D., led the development of feeding, airway management and blood utilization protocols.
And while all the team members in the PCICU are proud of the high quality of care they provide, they are perhaps more fulfilled by another board that hangs in the staff break room, Hughes says.
It’s the “Following Our Hearts” board, and it’s covered with photos of children—in Halloween costumes, in Christmas best, and at birthday parties.
“It’s really important for our unit to see these pictures,” Hughes says. “We take care of these patients when they’re at their sickest, then they get just well enough for us to send them to the cardiac floor, and then we hopefully don’t see them again. But that can be hard, and this helps us to really see the fruits of our labors.
“Forty years ago, a lot of these patients would have never had a chance at life. Seeing pictures of them swimming or taking karate lessons or going to their first day of school and knowing that we helped give them that chance at life, that’s really rewarding.”
Ainsley smiles out from her photo on the board.
A healthy heart
Ainsley’s first stay in the PCICU lasted a couple of weeks before she was moved to the cardiac floor. After another couple of weeks, she went home, but she had to return to the hospital after only two days. Her heart was failing.
She required an emergency ECMO procedure and another heart surgery, and she was placed on the heart transplant list.
“They told us not to expect her to make it,” Kim recalls. “They don’t sugar coat things; they tell you the truth, and they tell you the truth in a kind way. That’s a huge thing.”
The Hoopers created a prayer map, coloring in the states where they had family members praying for Ainsley. Other families with children in the PCICU—”our heart families,” Kim says—joined in. The nurses called their own family members in other states and countries.
“In two days, the whole nation was colored in—and 19 more countries,” Kim says.
Ainsley’s heart healed; she did not require a transplant. After two months, she moved to the cardiac floor. This time, when she went home, she stayed for good.
Other than a scar on her chest and some muscle weakness in her leg related to a brain complication from the emergency ECMO, there are no visible signs of the scary months she spent in the PCICU during her first year of life.
Ainsley is done looking at the photo album from that time.
She has moved on to photos on her mother’s phone. She admires her Elsa costume (from the Disney movie “Frozen”) and photos from Disney’s Frozen on Ice. She smiles at a photo of herself with her heart surgeon Mettler at the recent Heart Walk. She giggles at a video of herself swimming in her backyard pool.
“I like these pictures better,” she says, and this time her face wrinkles with a wide grin.
– by Leigh MacMillan