Margi Kirst sat next to her son's hospital bed at Johns Hopkins Hospital as she and three hospital workers tried to interest him in a bunch of multicolored balls and Legos.
"Over here, Camden, look," said Yun Kim, an occupational therapist, as she waved a ball in front of Camden Colston's face, encouraging him to grab it. After he grasped the toy, his mom leaned in for a hug.
"You OK?" she asked him, peering up into his eyes.
Camden, 16, had been in the Pediatric Intensive Care Unit at Johns Hopkins for six weeks after a surgery to correct his severe scoliosis. A complication from the surgery caused his lungs to stop working, and the boy, who also has autism, was breathing through a tracheostomy tube.
The scheduled playtime wouldn't have been part of the treatment plan several years ago for Camden or most of the critically ill children at Hopkins' PICU. These days it's considered an integral part of the children's recovery.
Though the benefits to hospitalized patients of getting out of bed and moving around have been known for decades, most hospitals keep young patients in pediatric intensive care units under heavy sedation for fear they might dislodge a breathing tube or IV line, or injure themselves. Sedation also was thought to reduce the fear and anxiety children experience when hospitalized.
Newer studies have debunked such notions and linked hospital sedation to weakness, and higher risks of post-traumatic stress disorder and delirium in all patients.
Now some hospitals around the country are adopting a system of play and movement to help in the recoveries of the critically ill children they treat.
"This is a huge culture shift for us as a staff and for PICUs internationally," said Sapna Kudchadkar, director of the Hopkins PICU clinical research program. "We know that PICUs internationally sedate their kids pretty heavily, so obviously for us to create a change in that paradigm, we needed to start doing research."
Hopkins started the program, dubbed PICU Up in 2013 when Kudchadkar and her team began studying how it could work. Kudchadkar examined 100 children, infants to 17 years old, who were admitted to the PICU for at least three days in 2015.
They began getting children, some with breathing tubes or other medical apparatus, to walk or play. None of the children involved in the study suffered an adverse event such as losing a breathing tube or IV line, or other harm. And none of them had to stop an activity because they became unstable.
The research was published online in Pediatric Critical Care Medicine on Oct. 12.
PICU Up also involves parents in their child's care.
For parents who have a child admitted to the PICU, Kudchadkar said, "it's easy to feel helpless"
"You feel like there's nothing you can do to make this better because there's all these people coming in and out of the room trying to ask you questions and do all these different interventions, and you don't feel like you have a role, and as a parent you're always the one who fixes things," she said. "With PICU Up, they have an active role in their child's recovery."
Kirst, who lives in Bethesda, said complications after Camden's surgery decreased mobility in the lower part of his body and weakened his lungs.
"So to compensate, they've helped me get him up on the side of the bed, even with the breathing tube in, which I was really excited about," she said. "He's a 16-year-old active boy, and I know he's not happy lying down. I'm all for getting him up because I think it helps his mood."
Kirst said the hospital workers get Camden up once a day and do range-of-motion exercises, where Camden tries to move his legs and arms. They often play hip-hop music videos on an iPad for him.
"Mobility seems to be the best thing to do to get him out of the cycle of getting sicker," Kirst said.
Will Colston, Camden's father, said he saw a "profound difference" in his son after the PICU Up program got him moving.
"They were able to give him a unique care plan that was the best thing for him," he said. "They were able to be creative. If they were tied to old rules, he would have stayed asleep, laying down, and would have continued to get weaker. I really appreciated the innovative approach."
Jerry J. Zimmerman, an attending physician in the Pediatric Intensive Care Unit at Seattle Children's Hospital, said heavy sedation can be detrimental to a patient's mental health. Some hospitals are now encouraging patients to keep diaries of their time in the ICU.
"One thing that sets you up for post-traumatic stress is you have this black spot in your brain and don't remember what happened to you," he said. "Having people more awake in the intensive care unit is a slowly emerging concept, with more stress on the downside effects of sedation."
Zimmerman said early mobilization for children in the ICU was becoming more recognized as a best practice, though only a half-dozen hospitals around the country have formal early-mobilization programs at their PICUs, he said.
"This has been recognized since the end of World War II, getting sick people mobilized, but I think historically people have been more focused on keeping people comfortable and safe when they're critically ill," Zimmerman said. "I think the people at Johns Hopkins just demonstrate that if there's a will there's a way to do this safely."
Kudchadkar is now exploring whether to find a therapy dog for the 40-bed PICU, which she thinks could help patients recover more quickly.
She said she has been surprised by how quickly PICU Up was embraced by the staff.
"I think I was anticipating more barriers in terms of just culture, people being nervous or anxious about moving these very sick kids," she said. "But one nurse would see another patient moving, and seeing it done safely, and then it just kind of skyrocketed from there and it just went through the whole unit. And over time PICU Up became like a mantra."