Children with multiple complex medical conditions face unique challenges and require customized care plans to meet their needs. 12-year-old Elias lives with several diagnoses, including cerebral palsy and a seizure disorder. This combination means Elias is no longer able to stand on his own or sit upright independently. “Now he doesn’t walk, and he doesn’t talk,” said Elias’ mom, Bernadette. His condition also affects his ability to breathe on his own, and Elias and his family have worked hard to learn and adjust to life on a ventilator.
In September 2019, Elias received a tracheostomy tube which allows a ventilator to assist with breathing. “He is now on the ventilator 24 hours a day,” shared Bernadette. When Elias arrived at La Rabida, his family received training on how to use this vital medical technology. La Rabida has a dedicated trach training class where patients and families learn everything from properly caring for and cleaning the trach site to learning how to connect the ventilator to the trach. “The classes explained everything to me and my husband. It helped us understand how to use the trach,” said Bernadette. “In the beginning, I was so nervous about the trach, but now I feel comfortable. Because of the classes, I learned what to do.”
When kids stay at La Rabida for extended periods of time, our staff develop strong bonds to the patient and their families. Our staff go above and beyond in celebrating every accomplishment and occasion, no matter how big or small. “When I came to the hospital on Mother’s Day, Elias had a greeting card with our picture on it. That really impacted me. I know that Elias can’t make that, but they helped him do it. It really made me so happy and I loved it so much. Especially coming from Elias. He is everything in my life,” added Bernadette.
When the time came for Elias to go home, La Rabida’s team of case managers and social workers provided the tools and resources Elias and his family needed to ensure a seamless transition home. “They put me on the right page and helped me with all of my options. They helped me prepare to bring Elias home, including finding the right supplies and equipment. It was exactly what we needed,” explained Bernadette.
When families leave La Rabida, we hope to have touched their lives in a way that leaves a lasting impact. “I am so glad that Elias was at La Rabida. The doctors, nurses, and therapists were so great. I was not worried when I couldn’t be at the hospital because I knew he was in good hands,” said Bernadette. “La Rabida helped me learn how to take care of Elias. For that, I am extremely grateful.”
This story was featured in the October 2020 issue of eCurrents. Read the full issue here.
