Work, work, work... Who has time to read? But sometimes, our world can expand when we hear a story from the patient's and family's point of view. Reviewed here are one older book, Josie's Story (perhaps you read it in 2009 when it was published), and two newer books, Frozen but not Forgotten and Five Feet Apart, newly arrived to read and learn from. Each issue of the Journal of Pediatric Surgical Nursing will present one older book that is still worth reading, or rereading, along with two new ones. Readers are welcome to make book review suggestions to the editor at mailto:[email protected].
As pediatric nurses, many of you have heard overhead or responded to a call for a "rapid response." Rapid response has become a part of everyday hospital operations. When someone, anyone, feels that a patient has taken a turn for the worst and wants a team to arrive instantly to evaluate the situation, a call is made and one hears on the hospital (and medical office) speakers "Rapid response, Room 607." However, not all nurses know the history of the rapid response and how it came from Josie's Story, A Mothers Inspiring Crusade to Make Medical Care Safe, written by Sorrel King, published in 2009 by Atlantic Monthly Press.
In this book, Sorrel King describes the true story of her child's death before discharge when Sorrel is unable to get the nurses to listen to her belief that something with Josie is not right. Josie was a completely healthy 18-month-old child hospitalized for bathtub water burns. Sorrel objected to the amount of pain medication being given to her daughter. Josie had needed Narcan twice to counteract her response to the medication, yet the pain team seemed to insist that more be given. Sorrell asked the physicians and nurses not to give it. She knew her child. And a final dose of medication before discharge resulted in cardiac arrest. The Kings lost their child because no one listened.
Sorrel King responded to her child's unnecessary death by speaking out, on television, at hospitals, and to the Institute of Healthcare Improvement. She made a video that has been frequently shown at medical conferences. She has become a supporter for other parents who lost their children because of medical error. This book is a must-read for nurses, as it enforces our need to listen to parents, most of whom are the true experts in their child's care.
Frozen but Not Forgotten, An Adoptive Dad's Step-by-Step Guide to Embryo Adoption, by Nate Birt, published by Carpenter's Son, Franklin, Tennessee, 2019.
Pediatric nurses interact with families whose pregnancies exist outside the norm. Frozen but Not Forgotten is a deep dive into the little-known world of embryos created for one family's use but gestated and raised by another. The book is written by a father who believes that every embryo is a life and has a destiny. He describes the desire to adopt an embryo rather than a born child; the family's publication of this desire to make a match; the journey to prepare for this, physically, mentally, and financially; and the open relationship with the donating embryo family. Religiosity runs deeply through the book, but regardless of one's own cultural beliefs, this is a fascinating true story of the creation and love of a sweet girl named Phoebe Birt.
Five Feet Apart, by Rachael Lippincott, with Mikki Daughtry and Tobias Iaconis, published by Simon and Schuster, 2019.
In Five Feet Apart, we enter into the lives of three teenagers, who, because of their illness, have grown up in hospitals. The authors examine the conflict between these teens who want to be normal, want to go to school, and want to be with their friends-and their parents, who want to protect them, enroll them in clinical trials, and keep them hospitalized and safe. Poe, a chef and food aficionado; Stella, a programmer and organizer; and Will, a cartoon artist, all have cystic fibrosis and spend most of their lives in the hospital fighting infection and waiting for lung transplants. Another kind of life exists for them, linked to the computer, where writing, video making, and blogging allow for interaction with the outside world. The enemy is a germ called Burkholderia. cepacia. Friends must stay a required 6 feet apart to make sure that Will, who has it, does not transmit it to Stella, who is high on the transplant list. They sneak to decrease the 6 feet to 5. The nurses depicted are both loving and strict, and patients' and families' fears of pediatric surgery for those with extremely diminished respiratory capacity are described. The book's themes include family stress, hospitalization far from home, and love and sacrifice. Five Feet Apart is a poignant page turner and can be shared with one's own children. It has also been made into a movie of the same title released in 2019.
Next Issue Reviews
Sylie's Life, by Marianne Rogoff (Zenobia Press, 1994)
School Nursing, 3rd Edition, by Janet Selekman, Robin Adair Shannon, and Catherine F. Yonkaitis (F.A. Davis, 2019)
Handbook of Perinatal and Neonatal Palliative Care, by Rana Limbo, Charlotte Wool, and Brian Carter (Springer, 2020)