The Surprising Face of Strength
Some of the most fragile patients often have the strongest spirits.
Born with significant heart defects, Lisa had three heart surgeries before she was 1 year old. She spent the first 14 months of her life in a pediatric hospital ICU. Each day was a struggle for survival. Her mother was afraid to buy a crib for fear her baby would never come home to use it.
In December 2018, the fragile baby was transferred to Ranken Jordan Pediatric Bridge Hospital with little hope for the future.
Lisa was completely dependent on a ventilator to help her breathe. She couldn’t sit up or communicate. She was unstable and her oxygen levels frequently dropped along with her heart rate.
Despite Lisa’s numerous challenges, the dedicated team at Ranken Jordan wouldn’t give up. And neither would Lisa.
Exploring New Ways to Blossom
After a few months at Ranken Jordan with regular physical, occupational and speech therapy, Lisa grew remarkably stronger. She became more alert and her personality began to shine.
Fast forward a year and a half, and Lisa’s progress has astounded her caregivers. Today, she is off the ventilator during the day, communicates with a special device, and loves music, swinging, blowing kisses and playing peek-a-boo.
Ranken Jordan’s Beyond the Bedside care model allows Lisa to spend her day socializing around the hospital rather than being isolated in her bed. Lisa’s team includes a pediatric cardiologist; pediatric hospitalists; physiatrists; nurses; physical, occupational and speech therapists; a music therapist; and child life specialists. Together, their expertise and holistic care has opened a new world for Lisa to develop, communicate and enjoy life.
“Lisa has undoubtedly overcome so many obstacles and continues to surprise me,” explains Rod Pellenberg, MD, a pediatric cardiologist at Ranken Jordan. “Therapy gives her the opportunity to learn and grow by exploring her environment more independently and by participating in developmentally appropriate activities. It definitely takes teamwork and the Ranken Jordan village to help Lisa achieve her developmental goals. And Lisa is the most important part of her team.”
The petite toddler now commands a room. “We are all inspired by the smile that lights up her face, her wave to everyone she sees, and her ‘dance wiggle,’ when she hears music,” Dr. Pellenberg says. “She brings joy to her family, other patients, and all Ranken Jordan staff on a daily basis.”
One of Lisa’s most remarkable achievements has been coming off the ventilator. “When she arrived, she was ventilator-dependent day and night,” Dr. Pellenberg says. “She is now off the ventilator during the daytime and she could possibly be off the ventilator completely, which is incredible.”
Offering a World of Support
Sara Sorenson, a social worker at Ranken Jordan, has been working closely with Lisa’s family since Lisa arrived at the hospital a year and a half ago.
Although Lisa was born in the United States, Lisa’s mother is a refugee from a small north African country. She speaks some English but Sara often coordinates an interpreter to better communicate with Lisa’s mom during care conferences and other more involved discussions about Lisa.
As a social worker, Sara has been instrumental in helping Lisa’s family access resources and overcome barriers, especially since Lisa’s mom is a refugee with limited financial resources.
All patients at Ranken Jordan receive the services of a social worker.
“Kids with complex medical needs come with a lot of psychosocial needs, which is why all families at Ranken Jordan are assigned a social worker,” Sara says. “They need support and help navigating complex medical issues and finding resources and services.”
Living Life to the Fullest
Sara is inspired by Lisa’s progress, especially since she is being weaned off the ventilator.
“Lisa’s respiratory progress was very unexpected. This gives hope. And it shows you really don’t know. Even though predictions are based on evidenced-based diagnoses, sometimes kids will show us something different.”
She continues: “Lisa has surprised us at every turn. It’s also motivating for our therapists to see the impact they’ve made with Lisa through therapy. Our perspective now is let’s see what she can do.”
Through everything, Sara says Lisa’s comfort and quality of life have been at the forefront.
“Our goal is to give Lisa the best quality of life. Lisa’s mom has the same hope for her daughter. We want to do right by her. She’s not a number, she’s Lisa.”
Dr. Pellenberg agrees. “Despite her significant medical conditions, Lisa is truly a happy, playful and loving girl who has overcome so many obstacles. She lives life to the fullest every day at Ranken Jordan. Every child deserves the opportunity to find happiness in their daily life, as she has, no matter the odds.”
Communicating Hope for the Future
Lisa’s ability to communicate was another unexpected accomplishment,
“In the beginning, we had to do a lot with Lisa to encourage her to interact,” explains Jessie Johnson, speech therapist. “Within two months, we saw a rapid change in her as she was able to leave her room more and be exposed to more experiences, including therapy and being around other kids. Her interactions exploded.”
Speech therapists taught Lisa to use a communication device, which includes buttons that allows her to express her wishes such as “no,” “more,” and “hi.” As she develops, more button options will be added.
“Lisa uses the buttons with complete intention,” Jessie says. “The device has given her control over something in her life. She is able to interact more with people and have some power over her decisions.”
The communication device represents a longer view of the future for Lisa. “Early on, I never thought Lisa would use a communication device and wave hi to everyone,” Jessie says. “She has shown us not to underestimate her. She can do big things. The communication device is something she can use long term. Now we look further ahead than before—none of us expected her to be here with us today.”
Another step toward success is Lisa’s growing ability to walk. Most recently, she began using a gait trainer to help her walk.
Celebrating the Spirit of Resiliency
In her two-and-a-half years of life, Lisa has never been home. But the goal is to get her there.
“Lisa is still a medically complex girl with very complex care,” Dr. Pellenberg explains. “The hope has always been to reach stability and comfort medically so Lisa could transition to home. Training her mother and other caregivers to be comfortable and competent in her care is challenging but her mother is receiving training here at Ranken Jordan toward that goal.”
Dr. Pellenberg is confident Lisa and her mother are up to the challenge. “We believe in both Lisa’s mother and Lisa. Lisa has overcome so much and has demonstrated such resiliency. An illness sometimes knocks her back temporarily but she gets back up and recovers. She truly is a daily reminder to never give up on patients.”
Sara says Lisa inspires the entire team at Ranken Jordan.
“Strength looks different in different people. Lisa had everything working against her but she is as tough as nails. She has this spirit in her that says I have things to show you. She lets us see that she’s not done yet.
“It’s a special thing to be part of her journey—Lisa has been a gift to us.”