Joey's Story

While Dealing with Overwhelming Medical Issues, Family Finds Support and Guidance Through Pediatric Palliative Care

Despite being born with numerous medical issues that expanded over time, Joey Cooper was a "ball of fire little boy," according to his mother, Kim Cooper.

"Joey laughed often and enjoyed life despite his many disabilities. And though he was unable to walk, Joey loved to watch TV, he loved listening to music," Kim said.

During the early years, young Joey did not improve medically and was given a very short life expectancy. Still, he amazed everyone, beating the odds and recovering from many serious health threats. He was hospitalized frequently, yet there was not a definitive diagnosis for his complex condition.

With many new issues developing over time, Kim began to question all of the medical interventions Joey was undergoing. Then while Joey was in the pediatric intensive care unit (PICU) at University Hospitals Rainbow Babies & Children’s Hospital, she was introduced to a wonderful support team through the innovative Center for Pediatric Palliative Care.

Enhanced Quality of Life for Patients and Source of Strength for Family from the Palliative Care Team

"My first thought when I met the palliative care team was to wish they had been available years ago," Kim recalled. “This was totally what we needed: to have a focused team that could help me navigate through the system for pain management or whatever we needed at the time. I did not want Joey to suffer in any way.”

Kim said she is grateful to the palliative care team for making her more comfortable with using pain medication to ease Joey’s suffering, and also for helping her learn to make the difficult decisions that she faced every day.

Joey’s quality of life improved because Kim now had a team of patient advocates to help her make the best possible decisions for his care. The team helped her set up advance directives and explained the options she could consider in regards to Joey’s care down the road.

"The palliative care team had such a kind and gentle manner that it made it easier for me to deal with overwhelming medical issues," Kim said. "They guided me with such compassion and helped me understand what was medically appropriate for Joey."

Pediatric Palliative Care Patient Advocates Guide Families with Compassion and Comfort

Kim explained that while the last few years of Joey’s life were the most difficult, the Center for Pediatric Palliative Care raised his level of comfort. The team helped her in situations where she needed to be Joey’s advocate from a family perspective, and not just from a medical perspective.

After going through 12 years of suffering with agonizing pain and continuous infections, Joey’s health continued to deteriorate. With a tracheostomy tube, CPAP (continuous positive airway pressure) to assist with breathing, and a feeding tube for nourishment, he was at a point medically that Kim believed was enough. With the support of palliative care, and with her son’s best interests leading the way, it was time to take Joey home.

"I was so fearful that Joey was not going to make it. He was fading away, and I did not want him to die in a hospital," she said. "I wanted to keep my son at home, with nutrition and with pain medications. I wanted him to lead the way, and I didn’t want to make this decision."

Working with the Center for Pediatric Palliative Care at UH Rainbow Babies & Children’s Hospital, Kim found hospice services that agreed to keep Joey comfortable at home. He ended up living another two months at home with his family and friends around him. During this time, the team explained to Kim what was happening from a medical perspective, and they stayed close by, giving Kim their cell phone and pager numbers. All Kim had to do was call if she had a question or an immediate need.

"Thanks to the wonderful people at the Center for Pediatric Palliative Care, I got to take Joey home and allow him to pass away in his bedroom, peacefully, surrounded by his family. And for that I am so grateful."