For Lena’s mom, Shannon, the Johns Hopkins All Children’s Home Care program has been a blessing. By allowing Shannon to care for Lena at home, it also means she is there for her 6-year-old, Ayla, as well.
Lena, now nearly 2, was born prematurely with several serious health issues, including congenital diaphragmatic hernia (CDH). She has been in and out of the hospital for nearly two years. Lena’s family moved to Florida to be near one of the country’s preeminent CDH surgeons, David Kays, M.D., at Johns Hopkins All Children’s Hospital.
“I used to think the hospital was the best place for her, but Lena’s almost 2 years old now and I’ve learned a lot about how to care for her. And Ayla needs me around too,” Shannon explains.
“The Home Care team is fantastic and I love that they are affiliated directly with the hospital," she continues. "Everyone is communicating and is aware of everyone’s needs. I’ve developed a relationship with the Home Care team, and more important, they have a relationship with my daughter.”
The Home Care program offers individualized, specialized care for each patient it serves, says Cindy Driscoll, R.N. and senior director for Home Care. “We work closely with the physicians from each team to plan out when the child will return home and what equipment and training will be needed for each child," Driscoll explains. "We offer highly trained, skilled home care nurses who offer therapy, social work and nursing. They provide training and education to each family on how to use equipment, plan out medication and measure dosages.”
The end goal is to get patients home with their families wherever possible and ensure that parents are equipped and trained to work with them at home. “We know that stress is reduced and families are happier when they are together,” Driscoll adds. “And, although we have a fantastic Child Life program that works well with siblings while families are in the hospital, we know siblings are happier when the entire family is at home.”
For Lena, the Home Care team provides supplies and equipment, including two ventilators, a nebulizer and oxygen. She has two respiratory therapists, a nurse and a nurse coordinator. The hope is that she will eventually be weaned off the ventilator so she can breathe on her own. Shannon is pleased with her progress so far and is working hard to see to it that it continues.
For moms like Shannon, Home Care is a wonderful program that brings families back together and makes caring for a sick child at home possible. The program is used for many ongoing health issues such as cystic fibrosis, asthma and other cardiac and pulmonary issues. Patients who require ventilation, feeding tubes and more also benefit. Home Care, which has existed at Johns Hopkins All Children’s since the 1990s, is growing and expanding with every success story. Clinical staff is available by phone 24 hours a day and same-day service is available. Insurance plans typically cover the service and staff assists in helping the claims process.