It is often difficult for parents and loved ones to know what to do in caring for their child during hospital stays, and it can often be a difficult topic to discuss. Christine Martinenza, RN, and Janie Klug, MSN, have implemented this month’s Patient Engagement Tool, The Care Partnership Pyramid, at Nemours/Alfred I. duPont Hospital for Children, which aims to help foster conversation and understanding in how to best allow for parents and medical staff to work as a team.
Many infants born with congenital heart disease (CHD) are transferred to the Cardiac Intensive Care Unit (CICU) immediately after birth or diagnosis for stabilization. As the mothers are still recovering from the delivery, many babies will undergo their first of many surgeries. Following surgery, these newborns are at risk for life threatening complications, require minimal stimulation, and around the clock medical care. It is very common for the medical team to ask families to remain hands off during this critical stage. The period of time spent in this phase of care is variable and for some can be several days to weeks. As the baby heals, the medical team is able to lessen sedation, remove lines and tubes, and gradually increase the amount of stimulation. This process of de-intensifying support can be lengthy and sometimes unpredictable leading many families to describe it as a roller coaster of emotions. Continue reading