Palliative Care Supported Jonathan's Whole Family
Born with severe birth defects, Jonathan wasn't expected to live to see his first birthday. But Jonathan was a fighter and defied the odds. He loved water, had a beautiful smile, was extremely social, and learned to army crawl to get around.
Still, Jonathan was fragile, and was hospitalized 35 times in his first 2 years. His bones broke easily and he was prone to infections. At age 5, he was hospitalized again and doctors said he needed to be put on a ventilator or he would die.
"We decided he was so full of life, he wouldn't want to be hooked up to tubes," said Cindy. "We decided to take him off life support. But Jonathan never did what doctors said he would do, he had his own agenda. He breathed on his own and kept getting stronger."
While he was in the hospital, the lung specialist suggested palliative care. The family initially balked. "We thought it was hospice, and we said no—we didn't know what to expect," said Cindy. "But a palliative doctor came to our house and explained it was more about support and not the end of life. It was a lot about us, what our wishes were, and how we felt about Jonathan."
Jonathan’s family agreed to palliative care. For the first few days after Jonathan came home from the hospital, it was touch and go. For 3 days Jonathan received around-the-clock nursing care at home. But again Jonathan got stronger and stronger, so much so that he ended up receiving palliative care for 5 years. Jonathan died at the age of 10, but Cindy said they were thankful for every year they had with him—years that she said were more enjoyable because of the palliative care they received.
The nurse from a hospice and palliative care agency had come once or twice a week to check Jonathan’s vital signs and brought pain medicine and other medication and equipment. When Jonathan had developed a sore from the cast for a broken leg, his parents called the palliative nurse, who came immediately if Jonathan needed care for the sore or anything else. "We had peace of mind knowing we were only a phone call away from help," said Cindy. "They really cared about him."
"They thought of things we wouldn't have thought we could do, like letting us hold him for as long as we wanted, giving him a bath, and taking his picture."
In the meantime, Cindy and Ray had twin boys and, 6 months before Jonathan died, a fourth son. Cindy said she loved how the palliative care team had included them in Jonathan's care, such as physical therapy and music therapy. The palliative care team had also made sure Santa visited every Christmas and they had even created a casting of Cindy's hand holding Jonathan's.
"When the palliative doctors came, they stayed for an hour or two and we talked about Jonathan, our families, and the other kids," said Cindy.
At 10, Jonathan ended up in the hospital, and this time, he couldn't pull through. According to Cindy, the palliative doctor "was there at our side. She stayed with us and sat outside while we held him. The palliative team thought of things we wouldn't have thought we could do, like letting us hold him for as long as we wanted, giving him a bath, and taking his picture.”
When Jonathan passed away, “I was going to bury him with a quilt my mom made,” said Cindy, “but the palliative doctor said to think about it, because ‘once it's gone, it's gone.’ I'm glad she suggested that because now I'm glad I have it."