My father was one of the kindest men that I knew. His vast community service and gentle, soft-spoken manner made him a popular figure in our small town. When he developed throat cancer, we all were devastated. Dad underwent numerous types of treatment for his cancer that rendered him unable to swallow in the long run. His 6-foot frame eventually shrunk to 138#, necessitating a feeding tube to be inserted. His first feeding tube, inserted by his gastroenterologist, was pretty easy to operate, although dad disliked it immensely.
After a year, the tube was beginning to leak, become moldy, and the area around the site was getting red and excoriated. We would ask each of my father’s doctors what could be done to help him and if it was time to insert a new tube. Each time, we were told that everything was fine and this is how it was supposed to look. As a nurse who works with children with severe disabilities and many times had feeding tubes or mic-key buttons in place, I knew that my dad needed help, his tube was not fine, and that was replacement was necessary.
I researched our area to see if I could locate a specialist adept at g-tube support and, unfortunately, found nothing. None of his physicians employed a nurse with this type of skill, and they appeared to know little about the actual care of a gastrostomy tube. Out of frustration, I reached out to a dear nurse friend, Joanne, from college, a certified nutrition support clinician at a hospital 2 hours from our home. Joanne is a clinical nurse specialist in the Nutrition and Weight Management Department at Geisinger Health System. With 27 years under her belt in this position, I was confident that she was an expert in the area of g-tube care.
After consulting by phone and sending photos back and forth, Joanne was shocked by the deplorable state of my father's g-tube and site. We concurred that he certainly did need a replacement tube. She provided a name of a physician that she had trained in the care of gastrostomy tubes who happens to rotate weekly through our area for a weight loss clinic. Joanne talked with this specialist, who agreed to take on my dad’s care of his g-tube. This physician was kind and caring, knowledgeable, and worked wonders for my dad’s peg tube, therefore, relieving our frustration.
Having such great support to add to dad’s care team eased our minds in his last few months as he continued to decline with his condition. Joanne remained just a call away for all kinds of questions that we had, and her knowledge and willingness to help were invaluable to me as one of the caregivers for my father.
I want to thank Joanne and all of the nurses who fill this very small nursing sub-specialty. There obviously is a need in the medical field for more nurses to provide care for patients with gastrostomy tubes. Joanne, who has dedicated her career to enteral and parental support, describes the job as extremely rewarding as there are very few who possess this type of knowledge. Joanne provides direct care, consultation, and education to patients with gastrostomy tubes and the physicians who insert them. She especially enjoys the long-term relationships that she has established with patients, with some as many as 20 years!
If you are interested in further exploring parenteral, enteral nursing, check into the American Society of Parenteral Enteral Nutrition.