Ricardo Dossantos has never known a life without hospitals, surgeries, tests, and medical equipment. This engaging nine-year-old boy with a winning smile and fighting spirit first came to Regional Hospice as a patient when he was eight months old. Born with the congenital digestive disorder Hirschsprung’s disease, Ricardo endured numerous surgeries to keep him alive.
“The doctors said he would not live because he had undergone so many surgeries,” explains his mother Eudiscelia. Regional Hospice nurses and social workers quickly got to know Ricardo, his mother and his grandmother as he waited for a transplant to save his life. The clinical team made regular visits taking blood tests, caring for him, and helping the family navigate the healthcare system.
“I would visit early in the morning,” says nurse, Joan Thorburn, Ricardo’s case manager. “I would find him under the covers and he was so used to having his blood taken that he just slept through it.”
In 2002 Ricardo received a miracle—a multiple organ transplant at Pittsburgh Children’s Hospital. After many months of recovery and extensive physical therapy, Ricardo’s condition improved and he was able to return home. Through it all, Regional Hospice stayed connected to Ricardo and his family.
“I remember every time Ricardo has been in the hospital, it has helped me that someone from Regional Hospice calls to see if there is anything they can do to help,” Eudiscelia says. “And when the hospital says I need someone to take his tests at home, I always tell them it has to be Regional Hospice,” explains Eudiscelia. “I feel more comfortable, taken care of…I feel I am okay. I want Joan!” she says.
“We have been strong advocates in the health care system for them,” shares Debbie Ryan, LCSW. “We have been the connection point through all of his treatments in Pittsburgh, Hartford, New Haven and Danbury. When a family goes through this type of illness, they are often in crisis. We have tried to make sure Ricardo, and his mother, get the help they need to manage what is clearly a very difficult situation.”
When asked how she copes, Eudiscelia acknowledges it is sometimes difficult. “It is hard when you have a sick child in the house,” says Eudiscelia. “When he was born it was a lot of pressure. Now it is okay, but it is not normal.”
After eight years and too many surgeries to recount, Ricardo is still frequently
hospitalized. However, when he is able to be at home, playing with his younger brother and cousins, Regional Hospice continues to provide palliative homecare to help with his complicated medical needs. “Ricardo has never known what it is like to not be highly clinically treated,” says Joan. “I think the longest he has ever been out of a hospital is three weeks,” she explains.
Eudiscelia acknowledges the extraordinary relationship with Joan, Debbie and the clinical team. “With Regional Hospice I have a family that is a part of my life and Ricardo’s,” says Eudiscelia. “I know that if there is anything I need they will do it for me and Ricardo.”
“Palliative care means many things to many patients,” says Joan. “With Ricardo and Eudiscelia it means a consistent presence through an ever changing medical environment. We’ve become like family to each other—and who better to care for your child than your family.”
