PAULA ELSENER REMEMBERS sitting by her son’s side in the St. Jude Pediatric Intensive Care Unit (PICU) for 25 long days. Time seemed to bend. The calendar flipped from December 2018 to January 2019. The days dragged and seemed to blur together. Her 17-year-old son, Tristan, had beaten cancer a year earlier and now faced a new foe — acute myeloid leukemia — as a result of his treatment.
A few days into Tristan’s PICU stay, he was placed on a ventilator because he was too weak to breathe on his own. Paula’s days consisted of three segments: “before rounds,” “rounds” and “after rounds.” During rounds, she discussed Tristan’s condition with his clinical team. She was hopeful, anxiously awaiting the moment he would open his blue eyes again.
While Tristan was sedated, Physical Therapist Amanda Curry and Occupational Therapist Sarah Schwartzberg of St. Jude Rehabilitation Services visited him to introduce mobility techniques and to teach Paula how she could help.
“They taught me exercises and worked on passive stretches for Tristan, knowing that if he didn’t keep moving he would lose mobility,” Paula says. “I would pick up Tristan’s leg and move it in certain directions and massage his arms.”
Step by Step
When Tristan awoke, he was weak and unable to move his arms and legs. His first goal was to hold his phone and turn on the power button. He slowly gained the strength for hand movements while the rehab team worked to sit him up in bed and, later, helped him rest in a wheelchair. After moving to an inpatient room, Tristan stood. Then he walked with a walker. Then he walked with a therapist. After 38 days, he was discharged to outpatient visits.
These guidelines for critical care patients are part of a new initiative at St. Jude called BRAVE (Beginning Restorative Activities Very Early). They are designed to help mobilize patients as soon as possible to decrease their time in the PICU, delirium and ventilation time.
What's Early Mobility?
St. Jude patients range in age from newborns to older teens with varying degrees of illness. So, the definition of mobility is different for each patient.
“Early mobility is much more than just walking,” Curry says. “It could be passive range of motion, or something as simple as turning a patient in bed or moving an infant into their parents’ arms. The overall goal is to help our patients return to their regular activities as soon as possible.”
By focusing on early mobility, we have a concentrated approach to not only focus on short-term outcomes but also to help our patients improve long-term functioning after they are taken off sedation and leave the PICU.
Children begin to lose muscle mass after only two or three days of immobility in the PICU. That can lead to additional concerns once they awaken from sedation. The BRAVE program will help establish a baseline of mobility for each child upon admission to the PICU. Clinicians will assess patients daily and carefully document and study the progress.
“By focusing on early mobility, we have a concentrated approach to not only focus on short-term outcomes but also to help our patients improve long-term functioning after they are taken off sedation and leave the PICU,” says Saad Ghafoor, MD, of St. Jude Critical Care.
These early techniques were invaluable for Tristan, who is now making strides toward increasing his activity level at his family’s North Carolina home between monthly check-ups at St. Jude. He gets winded during half-mile walks, but he tracks his progress with a step counter.
Developing that bond with our therapists early in the PICU was beneficial for Tristan and me, and it continues throughout our St. Jude experience,” she says. “That consistency of care is crucial.
“We’re still working on his strength and endurance, but he has certainly come a long way,” says Paula, who pauses for a moment as Tristan walks up and down the stairs of their home as part of his therapy.
“Developing that bond with our therapists early in the PICU was beneficial for Tristan and me, and it continues throughout our St. Jude experience,” she says. “That consistency of care is crucial.”
From Promise, Autumn 2019