Transitional Respiratory and Airway Center for Kids

How are providers working to make hospitals feel like home for kids with a tracheostomy?

When a child in need of long-term respiratory support is able to move from being intubated to having a tracheostomy, their world opens up. They no longer need to be sedated, and they can breathe, speak and eat. But that doesn’t always mean they get to go home.

While these kids are medically stable, the logistics of their care remain complex, often requiring home nursing care, specialized equipment, and training for parents and guardians.

For some, getting each of these ducks in a row is manageable, but for others, it’s close to impossible to create the ideal, safe environment for kids with tracheostomies, due to racial and economic disparities, living situations, a nursing care shortage and more. When that happens, patients remain in the hospital under the care of Children’s Hospital Colorado’s Ventilator Care Program. Last year, that program developed an offshoot specifically for these patients: Transitional Respiratory and Airway Center for Kids, or TRACK.

Currently, TRACK is home to roughly seven children, including infants, toddlers and young kids. They spend 100% of their time in the hospital and are housed in “neighborhoods” across two different floors at Children’s Colorado, Anschutz Medical Campus in Aurora. The program’s goal is to simulate the home environment as much as possible and help kids reach developmental milestones while they are stuck in the hospital waiting to transition back to life with their family.

“It is trying to make day-to-day life better and less hospital-like,” says pulmonologist Christopher Baker, MD, Director of the Ventilator Care Program. “They get up and they put on regular clothes, and they get out of their bedrooms as much as possible. … We are trying to do our best to meet an important need, but the most important need is that these kids need to go home.”

To bring TRACK to life, the team, which also includes Erica Bracken, Process Improvement Lead for the Children’s Colorado Breathing Institute, visited facilities across the country and met with others via Zoom. From their learnings, they developed routines and roles designed to give kids in the program the opportunity to simply be kids.

On the average day, that might look like waking up, getting dressed, and receiving medication and respiratory treatments. From there, it’s activity time. Every member of the team, including social workers, occupational and physical therapists, music therapists and more, are trained and outfitted with activity plans that help them keep kids active and engaged. In the afternoon, kids might receive more medical care and treatments before jumping into group time to focus on developmental skills and socialization. Right around shift change in the evenings, kids start winding down with baths, pajamas and even bedtime stories. Parents and caregivers are also welcome to join their kids for quality time and activities.

TRACK’s spaces are designed to engage too, with newly created playrooms, rehab spaces and big windows to help kids feel less like they are at a hospital and more like they’re at home, even when returning home is on hold. The team hopes to one day expand TRACK to a separate location that truly can serve as a surrogate home for these kids, especially as some spend years in hospital care.

This, says Dr. Baker, is not the end goal, of course. Home is the end goal for each and every child.