After raising seven biological children of her own, Kathy became involved in foster care. As a single mom, she adopted a set of four siblings. While raising this energetic bunch of youngsters, Kathy was approached to foster Devan. Devan was just four months old. He had been shaken badly and suffered severe brain damage. He needed a home that would be able to manage his many medical needs. His life expectancy was only about two years. Devan has experienced many health complications, including seizures, increased muscle tone, asthma, and scoliosis. He is unable to eat and is fed through a J-tube. He has undergone many surgeries on his spine, hips and shoulders, to place his feeding tube, and to correct excessive drooling. He has a pump that delivers medication to control his tone. Despite these challenges, Kathy says Devan immediately fit into the family’s busy schedule. “When he first came he was tiny. We just put him in his car seat and took him everywhere with us! Later we got a wheelchair and a van.” When Devan was two years old Kathy adopted him because as Kathy says, “He needed a family!” Devan went to school. He was able to interact with his family, toys and pets. As he has gotten older he isn’t able to do as much. He no longer sits comfortably so he rarely leaves the home.
Devan became involved with Nationwide Children’s Palliative Care Team four years ago. Kathy credits the home-based team with helping her to “navigate the system” to provide for Devan’s needs. “They were really helpful when we needed a special mattress for Devan and they are able to minimize his trips out of the home.” Kathy also appreciates getting to know the members of the team and the opportunity to transfer Devan to Hospice services if or when this becomes necessary. “If we need Hospice we already know the people who will care for Devan.”
Devan is now 16 years old. He sleeps a lot, but he also enjoys his life. He loves music, especially the piano and singing. He likes TV and he likes to be read to. “There is always some kind of music or activity going on in his room!” He demonstrates his love for his family with delighted smiles and laughter.