Story by: Kim Huston on February 10, 2020
Stephanie Deitchman, R.N., BSN, is a caregiver in both senses of the word. She has been the registered nurse caring for patients in the “Just For Kids” Critical Care Center at Norton Children’s Hospital. She also has been the concerned loved one of patients. She was a caregiver for her mother, who had lengthy hospital stays in intensive care and needed 24-hour home care afterward. She’s also been a mom worrying about her newborn son in the neonatal intensive care unit(NICU). Stephanie brings these experiences into her role as a nurse clinician for pediatric critical care, working with families in the Jennifer Lawrence Cardiac Intensive Care Unit (CICU) and the “Just for Kids” Critical Care Center, which is the hospital’s pediatric intensive care unit (PICU).
The care for a child with a critical health condition such as congenital heart disease can be extremely complex. The child is cared for by different providers from various hospital specialties, such as cardiology, cardiothoracic surgery, neurology, etc. Additionally, there are rehabilitation services, care managers, child life therapists, navigators, discharge coordinators and so much more. If the CICU were an orchestra, Stephanie would be its conductor: She works as a liaison between the physicians, staff and patient families to coordinate the best care, making sure the needs of a patient’s entire family are being met.
“When you’re in the hospital for a long time like many of our heart patients are, you see a lot of faces,” Stephanie said. “I’m a consistent face. I’m here to be a liaison and an advocate for those families.”
Her role has many facets. She is a care advocate for families, helping them prepare for care conferences and coordinating any necessary education they may need. Care conferences are meetings with a child’s care team, including physicians from all subspecialties involved with their care. Stephanie meets one-on-one with families before conferences to get an understanding of questions they have for their child’s physicians. Many times, she’ll give doctors the questions ahead of the care conference so the entire team is ready to have a discussion. She understands that everyone has different levels of comfort and understanding in medical settings. She’s there to bridge the complex terminology and anxious nerves that may come up for families.
“I tell them, ‘If you’re not comfortable asking questions or if you don’t know what questions to ask, I will help speak up for you,’” Stephanie said. “When a family member is in critical care, there can be a lot of complicated medical terminology given to you all at once. I am the person in the room breaking down the concepts so it’s more understandable for the family.”
She also helps manage the interdisciplinary rounds that take place twice a week in the CICU and PICU. The rounds include the nurse clinician; rehab team, including a physical therapist, occupational therapist and speech therapist; the patient navigator, social worker, care managers, discharge planners, child life therapy team, chaplains and nurse managers. The individuals discuss each patient, then round together as a team to meet with each CICU patient and family.
“Interdisciplinary rounds exist to make sure we are treating the whole child,” Stephanie said. “Not only that, it’s about making sure we’re meeting the needs of the family. Brothers, sisters, mom and dad: How are they doing? What do they need?”
Additionally, she plays a big role in making sure that patients and families are set up for success when they go home.
“I’m really passionate about making sure these families are prepared to go home, and when they get there, they have what they need to succeed.”
That includes keeping a child’s pediatrician up to date on their care while in the hospital.
“I keep an open line of communication between pediatricians and the hospital so the family has an easy transfer of care when the child returns to their primary care provider,” Stephanie said. “I want to help make follow-up care as seamless as possible.”
Children facing complex conditions often may need medical equipment at home. Stephanie coordinates with hospital staff and providers to make sure families get the education and prescription orders for any durable medical equipment (DME) they need to be ready for care at home.
“Technology has exploded since I started my career,” Stephanie said. “We are sending our kids home with way more advanced technology than we did in the past. With that comes coordination with durable medical equipment companies, working with staff to ensure that the family has had all the education they need to feel confident with using equipment and taking care of the child when they get home.”
This is something that Stephanie feels particularly passionate about, as she experienced it while caregiving for her mother. During her mother’s illness, she cut back her work hours and moved from a PICU bedside nursing role into an educator role. Her mother was on the lung transplant list and needed 24-hour care to monitor oxygen, a central line and intravenous (IV) fusion at home.
She likes to remind patients that it’s going to be harder than you think; but you can learn as much as possible and prepare.
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“I don’t think you know how hard caregiving is until you go through it with someone you love,” Stephanie said. “It was challenging for me, even with my training as a nurse. That experience made me truly understand what our families go through — and when this position became available, I knew I had to do it. This role is the perfect mix of education and nursing. I get to make sure families get the level of support and care that I know they need — because I lived it.”
She finds joy in seeing former patients and families around the hospital and seeing how well they’re doing.
“Sometimes kids need to come back for an X-ray or a scheduled surgery,” Stephanie said, “And mom or dad will tell me, ‘You know what, I don’t think I could have done this without the training you gave me. You told me it was going to be hard when I got home, and I really had no idea, I’m so thankful.’
“Other families that have gone to other facilities tell me that wherever else we went, ‘they don’t compare to what you’re doing here.’ Those comments are always nice to hear.”