The transition from the hospital to home is pivotal for a primary caregiver, especially when it’s your child, spouse or other loved one going home after a hospital stay. This was never more true for me at Catherine’s first discharge from the neonatal intensive care unit just 12 days after birth. Catherine was bundled in her car seat and ready to go. The nurse practitioner (NP) gave me more than 20 sheets of paper (I still have them) with specific instructions I was to follow at home. She quickly walked me through the care process. I started asking questions about follow-up, red flags, medication and other tasks like bathing and feeding. The NP quickly stopped me and said, “In my nine-plus years on this job, I have never had anyone ask me questions at discharge. The average person is ready to hit the door and leave.”
At the time, Catherine only had one medication and I needed to understand the medication schedule, dosage and side effects since I would be responsible for her care. Several months later during another hospital discharge, the stakes were higher; this time Catherine left with 14 medications, a pulse oximeter, oxygen concentrator, feeding pump and portable IV pole. I remember the mad rush of social workers, therapists and nurses in Catherine’s room. With so many moving parts, I had to pause and gather myself. Getting orders for equipment, home health confirmation, insurance approval, and managing through the medications were only the start of my list. I had to get my arms around everything.
Sometime later at yet another discharge, I had the doctor call in the prescriptions and drove to the pharmacy to pick them up only to find that I needed to go to a compound pharmacy on the other side of town. The wait time was 48 hours. My heart started to race as I thought of not having what she needed at home. I was afraid something would go wrong with my fragile baby girl. I immediately called the cardiologist from the parking lot of the pharmacy and asked if I needed to bring Catherine back to the hospital until her medication was filled. She calmed me down and instructed me on how to get Catherine through the next couple of days.
Over the last 12 years, I have been through the discharge process with Catherine following day surgeries, sleep study, feeding assessments and numerous visits to specialists. I quickly realized that I was the consistent point-of-care for her and many times her clearinghouse. You stand in this same space for your loved ones and you want to provide the very best care for them.