Patchwork Kid: A Boy’s Transplant Journey of Hope through the Midst of Tragedy
What lengths would you go through to live? What would you do to save the life of someone you love? I think most of us would do anything to save the person we love, but how long would you fight the odds to live? This book brought these questions to my mind and made me wonder about my own tenacity to survive. The name of the book in question is The Patchwork Kid: A Boy’s Transplant Journey of Hope through the Midst of Tragedy by Rodger R. Ziegler. As the title suggests, it is the tragic story of a father detailing the life of his son, who from birth has had to face struggles that would make an adult want to throw in the towel. It follows the Ziegler’s battles with the illnesses that their son Noah faced and their determination to overcome all obstacles. Noah was born with gastroschisis, and after having surgery to put his intestines into his abdominal cavity, he stayed in the hospital for months recovering and eventually was able to go home and grew to be a normal boy.
Tragedy struck when he was nine and he became critically ill. Noah was complaining of a tummy ache and had a fever. He began to vomit blood so his father rushed him to the hospital while his mother stayed with the other kids until a sitter could get there. The first hospital could not determine the cause of the vomiting and recommended he be taken to another hospital nearby. When his condition continued to deteriorate, he was flown to the nearest hospital in the area with the facility to treat him. He almost died on the flight when his blood pressure dropped. His parents prayed and hoped to find an answer to save their child’s life. Once there, he had to undergo exploratory surgery to see if they could determine the source of the illness. What they found was a midgut volvulus, or a twist in his intestines right where the main blood supply fed his intestines. They had to remove ninety-five percent of his intestines due to necrosis. He would require a Jujunostomy and survive on TPN or IV nutrition mostly since he now had no intestines to absorb nutrients. The book describes their day to day life and the care and constant vigilance needed by his mother.
After being on the IV nutrients for a couple of years his liver began to fail. Roger explains the frequent hospital visits and eventually being placed on the transplant list. Noah was then referred to the best hospital in the country for liver and intestine transplants for children in Pittsburgh. He made several trips to this hospital before having to be admitted on a permanent basis until the organs became available. The stress that the family had to endure not only with the diagnosis, the daily care, and then having to be split up while Noah waited for his new organs was intense. There were several times that I cried over the decisions that they had to make for Noah and their family. Their faith through it all never wavered. They trusted that God had a plan and prayed for continued hope and strength.
Because of this book, I have a more profound respect for the doctors, nurses and surgeons that cared not only for this boy but his family. That is what it means to treat the patient not the disease. I also have to tip my hat to the supporting churches and families that helped them in their time of need. Its so easy to see all the negative in the world, but his book reminded me that there are still good people out there and to not lose faith in God or humanity. I admire Mr. Ziegler’s sense of humor throughout the whole book. He tried to lift his wife and son’s spirits with humor when he could and even in his writing he threw in funny statements to catch the reader off guard and to lighten the darkness of that situation. I enjoyed his writing style and recommend reading the book. Don’t forget to give your loved ones a squeeze when you are done.