About two months before Darcie came to Weisman Children’s, Darcie went into respiratory failure, while additionally needing surgery for spinal cord compression. When she first arrived to Weisman Children’s Rehabilitation Hospital, Darcie was still unable to breath on her own and required a tracheostomy tube and ventilator, as well as a gastrostomy tube for nutrition because she could not eat. She also needed a special brace called a HALO vest to immobilize and protect her spine as she recovered from her spinal surgery. At the start of her stay with Weisman Children’s, Darcie’s health was an adjustment for her and her entire family. Karissa, was unsure where things were going with her daughter or what to expect, however the friendly, family-like environment the staff provided helped her to feel comfortable quickly.
Karissa shared, “Shane (one of Darcie’s respiratory therapists) explained all of Darcie’s respiratory needs right away which helped us get up to speed on how she was being helped and how we could help her. This made us feel comfortable at Weisman Children’s from the beginning.” For Shane Pelletier, RRT, AE-C Weisman Children’s Respiratory Supervisor, making the family and patient feel comfortable is an important part of Weisman Children’s philosophy.
He explains, “I try to put myself in their shoes. Just through experience, I know that at times during a healthcare journey, families are in the dark because either they did not receive enough information or were not mentally in the right place to remember what they were told. Most of the time, they come to us without knowing too much about their child’s condition. As they start coming through our door, I start talking with them. I do my homework and try to get a good handle of what is going on with them. You want to treat people individually to what their situation is.”
While Shane was able to attend to Darcie’s respiratory needs right away, getting Darcie interested in therapy sessions with the inpatient team was another matter entirely. The HALO vest limited Darcie’s movement as she recovered from surgery, which required her to rely on others for all movement, making her understandably hesitant to trust a group of new people handling her. “At first Darcie did not want to go to therapy, but the child life team came up with a star chart that gave her incentive to go to therapy and that really worked. Once she got started, she couldn’t get enough,” Karissa shared.
One of Darcie’s occupational therapists Nicole Matyas, MS, OTR/L, CBIS, remembers the progress she saw in Darcie once she got more comfortable with therapy. “I knew I had to get buy-in from her. My goal was to get her to trust me. She really took off once we got comfortable with one and another.”
While Darcie’s HALO vest limited her movement, Nicole found creative ways for Darcie to progress while easing her nerves about moving again. “We started with just getting her to tolerate an upright position comfortably before we were able to progress her to engaging with something while still maintaining her sitting balance. It was a fine line finding that balance of maintaining her trust but still pushing her forward. Once we were able to start doing outdoor outings with her, we took her to the park and all she wanted to do was touch the top of the monkey bars. It was so nice to see her not only doing things a typical 4 year-old would do but trusting us to help her push herself outside her comfort zone.”
Eventually Darcie was able to have her HALO vest removed and she continued to work to regain her strength. What impressed Nicole most was Darcie’s drive despite being just three years old during most of her treatment in the hospital. “Once the HALO came off she could actually turn her head and move her body. She quickly gained her strength back once she could move better, which allowed us to find creative ways to challenge her on how to regain confidence in her body, such as getting her to recruit enough core strength to scoot herself forward on a slide. She is one of; if not the most resilient patient, I have ever worked with. She has received more medical attention by the age of three than most of us will receive in our lifetimes. Getting her back to do the things she loves was a really awesome experience.”
Darcie’s journey with Weisman Children’s did not end when she discharged from the rehabilitation hospital. Darcie transitioned to Weisman Children’s outpatient program in Marlton where she continues to regain her strength and mobility. Karissa notes that transitioning to outpatient was easier by staying in the Weisman Children’s system. “Darcie does not always do well with new people, so sticking with Weisman Children’s for outpatient allowed us to continue to work with Amanda, one of Darcie’s weekend physical therapists. We were very comfortable with Weisman Children’s after being in inpatient for nine months, so the transition to outpatient has made things very easy.”
Amanda Palombo, PT, DPT, PCS, Darcie’s outpatient physical therapist notes that being able to easily communicate with the inpatient team streamlined Darcie’s outpatient progress and allowed her to easily continue Darcie’s plan in outpatient therapy. Amanda credits Karissa and Darcie’s grandmother for her continued success. “They really work on things with her at home, which is a very important part of the outpatient program. They are great in motivating Darcie, coming into outpatient she has been very brave and done very well, which is a big difference maker.”
Darcie’s progress in outpatient continues every day; Amanda explains a moment that Darcie took her by surprise. “When we first got her in a gait trainer, it was a new piece of equipment for her. She usually would get nervous about doing stuff like this, but this time she got right in, saw herself in the mirror, and walked towards herself. I was so proud of her to even be trying it, and this showed me that she trusted me and herself.”
What makes Darcie’s journey so special was the impact she has made on everyone along the way, including her own family. For Karissa, getting to see her daughter act like a kid once again has made everything worth it. “Seeing her playing, acting, and smiling. Seeing her actually having fun and interacting with her therapists makes me happy. When we went to the playground, watching her play on the equipment was never something that crossed my mind that she could do, and yet there she was hanging from the monkey bars having so much fun.”
Karissa and Darcie have both enjoyed their time working with Weisman Children’s. “The family atmosphere, the way the staff works within the child’s needs, finding what motivates the child to help them succeed. Even Darcie’s neurosurgeon is amazed by her progress. He cannot believe she is doing all the things she is doing right now. We are all excited for her next step in her amazing journey.”