Young parents dream of pink blankets tucked neatly around their little girl as they proudly carry her to the car in her car seat. Sometimes real life does not fit neatly into our plans.
I met Stacy’s family many months into her long-term stay at Children’s Hospital. Stacy was 6 months old and had never been home. Other than a brief stay at a skilled care facility, Stacy’s little body was too fragile for skilled care. She had a tracheotomy and was ventilator-dependent, relying on her vent for every breath. She had never taken a bottle and was fed through her gastrostomy tube.
Stacy’s parents, Amy and John, were young, not married and had no home of their own. My first meeting with them was a challenge. They were demanding and angry with the failed skilled care. Their only goal was to bring their daughter home — but to what home, and would Stacy receive the complicated medical care she required? As a nursing case manager, I knew this case would take patience and would require small steps to provide Stacy’s continuum of care.
The mission of Children’s Hospital, “that all children may have a better chance to live,” helped me stay focused. I gathered a multidisciplinary care team and collaborated with the physicians to develop the plan of care that would result in Stacy’s going home.
As Stacy grew and stabilized, I knew the parents were depending on me to keep moving toward the goal. The multidisciplinary team and I provided encouragement for Amy and John to secure a home, employment, and to learn how to care for their infant daughter.
After 13 months of hospitalization, many medical challenges and changed plans, Stacy was escorted home in her car seat, surrounded by parents, medical equipment and a little pink blanket.
When Stacy returns to the hospital, her mom tells me how wonderful it is to have Stacy home. Her parents have now become her best case managers, managing all aspects of her care, making adjustments and seeking my assistance as needed. Amy often remarks how some people just don’t know how lucky they are, and that children are such a precious gift.
Nursing case management is a career filled with challenges, adjustments and hope for the future. No one knows how long Stacy will live, but we do know that through flexible and caring case management, we helped a young family enjoy their precious days with their child in their own home.
