Lisa

Children with complex medical needs face an intricate web of challenges throughout their lives. To reach their fullest potential, patients and their families need an equally strong web of support. At Ranken Jordan Pediatric Bridge Hospital, care goes beyond medical treatment. Through the Care Beyond the Bedside® model, patients are given opportunities to play, learn, and grow so they can thrive not only in the hospital, but at home and in their communities. This level of care is made possible through the generosity of donors—changing the lives of patients like Lisa.

Born with significant heart defects, Lisa underwent three heart surgeries before her first birthday. She spent the first 14 months of her life in a pediatric ICU, where each day was a fight for survival.

At 18 months old, Lisa was transferred to Ranken Jordan. She was a fragile toddler, fully dependent on a ventilator. While most children her age were exploring their world, Lisa could not sit up or communicate.

But Lisa’s story did not end there.

Supported by a dedicated interdisciplinary team and her own remarkable determination, Lisa began to thrive. Through regular physical, occupational, and speech therapy, she grew stronger and gained new skills. Just as importantly, in the Care Beyond the Bedside model, her personality began to emerge. Lisa went from being unresponsive to engaging with caregivers, family members, and peers. She learned to wave hello, blow kisses, and communicate using assistive devices.

Her care team, including specialists in cardiology, rehabilitation, nursing, therapy, and child life, worked together to support her development in every dimension.

“Lisa has overcome so many obstacles and continues to surprise us,” shared Ranken Jordan’s pediatric cardiologist, Dr. Rod Pellenberg, “It takes a village to help her reach her goals, and Lisa is the most important member of that team.”

Lisa also participated in the Optimization Zone (OZ), where play, movement, and socialization accelerated her progress. Over time, she reached a major milestone: she successfully weaned off the ventilator.

For the first time, conversations shifted from survival to possibility—when could Lisa go home?

Supporting the Whole Family
For children like Lisa, medical care is only part of the picture. Families must also navigate complex emotional, social, and logistical challenges.

Lisa’s mom, a single parent and refugee, faced additional barriers as she had to navigate the intricate web of caring for a medically complex child. She was still learning the language and building a stable home life for her and her daughters.

With support from donors like you, Ranken Jordan’s social work team helped bridge these gaps. They coordinated interpreters to ensure she understood Lisa’s progress and continued medical needs and prepared her to care for Lisa at home with confidence. All with the goal of ensuring that Lisa and her family had the best quality of life.

At age five, Lisa went home for the first time.

Setbacks—and Strength
About a year later, Lisa became ill with a respiratory virus and required hospitalization, including a return to ventilator support. Once stable, she returned to Ranken Jordan to rebuild her strength and regain independence.

Once again, Lisa showed extraordinary resilience.

She made significant progress, became stronger, more independent, and continued her education. She formed friendships, participated in activities, and embraced daily life with joy. But it became clear that she would continue to need respiratory support, including daily breathing treatment and ventilator support while she slept.

To an outside observer, Lisa might seem like any other 8 year old, just with a few extra medical devices. However, her congenital heart disease and chronic lung disease care make her care highly complex. She requires constant monitoring and skilled support around the clock.

Overcoming Barriers to Home
The biggest challenge to Lisa’s return home wasn’t her medical condition—it was access to private duty nursing.

Lisa requires an awake, overnight caregiver to continuously monitor her breathing while she is on a ventilator. This caregiver must remain alert and prepared to perform suctioning, closely track and respond to any changes in her oxygen levels, and act immediately in the event of an accidental decannulation by reconnecting her to the ventilator. For a patient like Lisa, every second is critical—immediate intervention can mean the difference between life and death. It is not sufficient to have a caregiver in another room who is asleep and relying solely on alarms.

Lisa qualified for 112 hours of nursing care each week. However, a nationwide shortage of private duty nurses, particularly those trained to care for pediatric patients on ventilators, made it extremely difficult to secure consistent coverage.

Recognizing this gap, Ranken Jordan launched a pilot program last year in partnership with Team Home Select, a private duty nursing provider. Through this collaboration, Ranken Jordan nurses can step in, in select cases, to provide in-home nursing care for Ranken Jordan patients. Because Medicaid reimbursement rates for in-home care do not fully align with the cost of this specialized nursing, donor support plays a vital role in closing the gap.

Working with Team Home Select nurses, Ranken Jordan identified additional nurses willing to provide in-home care for Lisa. With private duty nursing coverage secured, thanks in part to donor support, it was finally time to prepare Lisa and her family for her long-awaited return home.

From Care Beyond the Bedside to School
Due to the length of time Lisa was hospitalized, one major milestone she had never reached was attending school. Although Lisa participated in Ranken Jordan’s Optimization Zone (OZ) during her first stay at Ranken Jordan, she was never formally enrolled in school.

Ranken Jordan’s education liaisons partnered with Lisa’s family and their school system to arrange for a homebound educator to come to Ranken Jordan and teach Lisa, focusing on core subjects such as reading, writing, and mathematics. Beyond academics, donor-supported Care Beyond the Bedside programming provided Lisa with valuable enrichment opportunities, including music, art, science, and sports. These experiences ensure that children like Lisa continue to grow, learn, and engage in meaningful ways beyond their medical care. Still, despite this progress, Lisa had never experienced being part of a traditional classroom.

Ranken Jordan education liaison Ann Meyers, familiar with Lisa’s unique educational journey, worked closely with her family and the St. Louis Public School District to develop a plan to transition Lisa from homebound instruction to a school setting. After returning home at the end of May, Lisa enrolled in the extended June summer session at a school designed for children with complex health and academic needs. She will continue to attend in the upcoming school year.

Preparing the Family for Success
A successful transition home required more than just medical readiness; it meant preparing Lisa and her family emotionally.

Ranken Jordan child life specialists Bridget Nesbitt helped ease this transition. She created personalized tools, including an “All About Me” book that Lisa could share at school, helping her tell her story and express her excitement about going home.

Bridget also supported Lisa’s younger sister, who spent more time connecting with Lisa through FaceTime and visits to Ranken Jordan than she had while living with her at home. She created a special book to explain Lisa’s conditions and medical equipment, including a medical play teddy bear with a G-tube and tracheostomy. This gave her sister the chance to safely touch and explore the equipment.

These thoughtful interventions help families adjust, strengthen bonds, and ensure long term success at home.

Her Best Life Is Possible
Lisa’s journey is a powerful example of what long term, specialized pediatric care can achieve.

At Ranken Jordan, donor support helps make it possible to care for the whole child, not just medically, but developmentally and emotionally. Because of that care and support, Lisa has moved beyond survival. She is learning, growing, forming friendships, attending school, and living at home with her family.

Lisa’s story is not just about overcoming medical challenges. It’s about what becomes possible when care goes beyond the bedside—supporting the whole child, the whole family, and the bright future ahead.