July 2019
Jennifer
Kupetz
,
RN
CICU
The Children's Hospital of Philadelphia
Philadelphia
,
PA
United States

 

 

 

Jenn took care of our son, S, during his stay in your wonderful CICU. Tragically, our 13-day old son passed away at your facility. Jenn's compassion and kind demeanor made an unimaginably difficult situation a bit more bearable. I am confident that after reading my words you will agree that Jenn is a DAISY Nurse. I have been an oncology/hematology/BMT nurse for 12 years. I have spent my career caring for adults and children during all stages of their treatment, including end of life. Never could I ever have imagined that I would be on the other side of the patient/nurse relationship with a critically ill child. However, that is exactly where I found myself when S was airlifted to your CICU days after he was born. For as long as I can remember, I longed to be a mother. The powerful love I felt for my son was and will always be the most powerful love I have ever felt. After short stays at two other local hospitals, it was discovered S had an incredibly rare genetic disorder called Trifunctional Protein Deficiency and was in heart failure. Upon arriving to your CICU my husband and I were greeted by Jenn and the doctor. The doctor delivered the shocking news that no parent should ever have to hear. In order to possibly save S's life, he would have to be placed on an ECMO machine. As I crumbled to the floor, it was Jenn who embraced me as my world seemed to be crashing. That first day in your CICU was the worst day of my life. Aside from the mental anguish, I was post-op from a C-section and my breasts were engorged and leaking. My body was making milk for a baby I would never feed. Jenn helped us navigate that first day with a tender compassion I will never forget. I truly felt she was grieving alongside us. It was an empathy I did not think was possible from a person we'd just met. Jenn found a quiet room for our family to collect ourselves. She updated us constantly regarding S's treatment and status. She recognized we needed a private place to cry together, and reserved a sleep room for us. Jenn understood what our family needed that first day before we did. From the moment we arrived at CHOP, I knew I did not want S to suffer and expressed this to Jenn. She helped me find the confidence to express our wishes for S in the interdisciplinary meetings she organized and attended. The most powerful gift Jenn gave me that first day was the ability to stand by S's bedside. My first instinct in this situation was avoidance. I couldn't mentally comprehend having to see my sweet, precious, innocent baby so critically ill. She gave me the encouragement and strength needed to stand proudly at his bedside as his mother. While Jenn was never S's direct care nurse, she checked on us frequently during our stay. I would watch her mentor new nurses, manage the flow of the unit, and help where needed. I soon realized Jenn was a strong leader in the CICU who provided professional, kind care to all patients and families. A little over a week after our arrival, we made the decision to allow our son to peacefully die. His heart had not recovered as hoped. Jenn helped arranged S be moved to a private room on the unit. She encouraged and assisted my mother-in-law to hold S while still on ECMO.
Remembering and honoring my strong conviction that S not suffer, she whispered in my ear, "He's comfortable, I gave him the morphine myself", as my dying son was placed in our arms. S died peacefully in my arms minutes later, and I knew he had not suffered. I chose not to participate in S's postmortem care. I had done this as a bedside nurse and did not feel I could do it as a mother. S's bedside nurse that day, and Jenn would care for our baby during his last moments in the CICU. I confidently knew these two incredible nurses would care for S as if he were their own. As I prepare to return to work as a nurse, I would like Jenn to know she not only greatly impacted our experience with S, but has impacted those I will care for as a professional nurse in the future. Thanks to Jenn and the incredible CICU team, I am at peace knowing our son truly received the best possible care.