The Cutest Hour at LeBonheur

Toby Tracheasaurus™ is a favorite therapy tool of pediatric therapists. We often hear stories about how children are introduced to the Passy Muir® Valve through interactive play with Toby, the toy dinosaur who has his own tracheostomy and valve. Recently we learned that Toby is quite popular in a group therapy session for children with tracheostomies and on ventilators. The team at LeBonheur Children’s Hospital pulled out all the stops to make this special play group happen. I recently spoke to Amy Claire Petro, the speech-language pathologist who initiated this program with child life specialist Molly Pearce, two nurses, Hillary Arnold and Virginia Burbank, and a physician, Dr. Stephanie Storgion. Amy Claire started her story by telling me why the team at her hospital felt this group was needed. The majority of the children who have tracheostomies and are mechanically ventilated have spent the first year or more of their lives in the hospital, often confined to just one single hospital room. When these children are discharged home, they quickly experience “sensory overload” from the stimulation of new environments. Amy Claire said, “Some children have been so overwhelmed by new sounds and sights when leaving the hospital that they don’t even make it past the car ride home and have to turn around.” She knew that they had to find a way to get these patients out of their rooms to experience new environments and to socialize with other children prior to discharge into the bigger world.

Some children have been so overwhelmed by new sounds and sights when leaving the hospital that they don’t even make it past the car ride home and have to turn around.

But getting three or more children with trachs and vents in the same room at the same time is no easy matter. According to Amy Claire, it took a couple of years to work out all of the logistics. The first challenge was to identify a physical space in the hospital large enough to work with up to five ventilator children and their caregivers and equipment, and to install the appropriate number of oxygen and suction outlets. The second challenge was to coordinate the staff so that there was a therapist for every child in the group who would be responsible for attending to suctioning and all other respiratory needs. Multiple disciplines share this responsibility, including nurses, respiratory therapists, occupational therapists, speech pathologists, physical therapists and child life specialists. One nurse comes in on her day off as a volunteer to assist with ventilator management.

The play group now meets every week on Thursday afternoon. During fun activities, the therapists co-treat and address specific therapy tasks while the children experience social time with their peers. For example, while the children are painting, the physical therapist works on positioning and the occupational therapist addresses sensory and fine motor goals. During storytime, the speech pathologist focuses on Passy Muir® Valve wear-time, vocalizations and attention to tasks. Amy Claire said it is a great opportunity for the children to tackle social skills that are often difficult for them, such as turn-taking and learning to accept “no.” The children are not the only ones who benefit from the group. All of the staff receive great joy watching the children play and interact. According to Amy Claire, “Doctors will just stop by because they are having a rough day and need a happy moment.” The parents and caregivers are very pleased with the group. For one family with two young children diagnosed with myotubular myopathy, this therapy group was the first time the two brothers were able to meet! The play group has been so successful that plans are in the works to add another “outing” for the children on Wednesdays called “ChiIdren’s Chapel.” Many of the families look forward to taking their children to church services when they go home, so an activity like this can prepare them for what most of us take for granted. We look forward to hearing more about the children’s adventures at LeBonheur!

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