- Meet Consumers/Patients
Meet Tim Weaver: A Teenager on the Go
Tim’s diagnosis of Hirschsprungs disease has necessitated that he receive parenteral or enteral feedings since he was three days old. But you would never know by looking at him that he has any kind of health condition whatsoever.
I had never met Tim until the Oley regional conference in Chicago, Illinois, earlier this year, though I had agreed to write this article about him and I had met his mother, Ann, once or twice. When I first sought Tim out once the conference had started, I couldn’t find him. I did notice a young man about five foot five with a healthy-looking build standing at a table next to mine during one of the presentations, but it didn’t even occur to me that he could be thirteen-year-old Tim. I initially thought this young man was perhaps a student in high school who was at the conference lending support to a relative on parenteral (PN) or enteral (EN) nutrition. But that’s the beauty of being on PN and/or EN feedings! They keep many of us so healthy that it is sometimes very difficult to tell who the patients are at Oley conferences and other gatherings for homePEN consumers.
Trouble at Birth
Tim has been on PN and/or EN feedings essentially since birth. Doctors actually knew that something was amiss when Ann was thirty-one weeks pregnant with him. Her ultrasound showed that Tim had a dilated (enlarged) bowel, which is sometimes indicative of an obstruction. When Tim was born, he was diagnosed with Hirschsprungs disease. Hirschsprungs is a condition where nerve cells that are responsible for peristalsis don’t descend into the lower intestinal tract. The absence of these nerve cells make passing stool difficult or sometimes not possible at all, thus causing an obstruction. Hirschsprungs is often detected at birth as infants don’t pass meconium, which also contributes to difficulty having a bowel movement. Hirschsprung’s is frequently diagnosed with a rectal biopsy; in Tim’s case, it was discovered when he underwent exploratory surgery at three days old. During this surgery, the doctors discovered that Hirschsprung’s had affected Tim’s entire colon, all of his ileum, and half of his jejunum. All of this portion of Tim’s intestinal tract had to be surgically removed. This surgery left Tim with only 51 centimeters of bowel, and dependent on PN.
When Tim was only two weeks old, his parents were asked, “Do you want to do anything more?” Several physicians felt that Tim’s condition was incompatible with life. These physicians told Tim’s parents, Ann and Mike, that Tim would need PN to survive, and that the PN would lead to liver failure and, ultimately, to Tim’s death. The physicians felt that it might be better for Ann and Mike to let go—before they became too attached. Fortunately, Tim’s parents obtained a second opinion.
Tim was PN dependent for several years, but his PN was gradually reduced as his bowel grew and as he tolerated increases in his EN. By the time Tim was three-and-a-half years old, he was completely off of PN and was growing from a combination of EN and oral intake. He kept his central line for an additional four years for hydration. Tim currently receives 1400ccs of formula through his gastrostomy tube (G-tube) nightly, eats multiple meals throughout the day, and takes an additional liter of electrolyte solution. Teamwork While many kids Tim’s age are dependent upon their parents to help them hook up to and disconnect from their PN and/or EN feedings, Tim manages his own EN feeding care. He changes his button, hooks himself up to his pump each night, and disconnects himself from his pump in the morning. Tim has been mixing his own formula and taking charge of his own care since age six or seven. Now thirteen, he feels he really mastered the entire process about five years ago. A good part of Tim’s success health-wise can be attributed to his having a very supportive family and an outstanding doctor managing his care. Tim is treated for his illness at Children’s Memorial Hospital in Chicago, and he had wonderful things to say about the phenomenal care he has received there over the years. Tim’s doctor has followed him since he was a month old and both he and Ann are comforted in knowing that they can call her any time day or night.
Tim’s doctor is very proud of all that Tim has accomplished thus far in spite of his having a challenging health condition—as she should be! Not only does Tim have an admirable positive mental attitude with regards to his care, but he also earns all As and Bs in school! In addition to maintaining an impressive grade point average, Tim also enjoys playing the tuba in the school band.
Tim does a conscientious job of managing his enteral feeding regimen, and he has managed to avoid being hospitalized for more than a week at a time. This permits him to keep up with his schoolwork. Other than the occasional button leak or challenge in tolerating his formula if his gut is having a bad day, Tim has enjoyed good health with few serious complications over the years.
Tim prides himself on blending in with his classmates and not calling a lot of attention to his health condition. In fact, when he wears the backpack that carries his EN formula to school, many of the other students and teachers have mistaken it for a Camelback®, which holds regular water. While Tim does keep a low profile about his health condition, the teachers and faculty at school are aware of it, and they are very accommodating when necessary. Tim has received an extra set of books for home just in case he is too sick to make it to school and needs to take a day or two off. Tim also takes the books with him on the rare occasion that he needs to be hospitalized.
In order to keep well hydrated during the day, Tim keeps plenty of water bottles in his “learning team’s” office. He is also permitted to use a private bathroom at school if and when he needs to change his ostomy bag. While some kids in junior high school can be cruel to those who are different, Tim’s friends at school are very accepting of his illness and they don’t treat him any differently than they treat everybody else.
Go White Sox!
Tim’s hobbies and interests are very diverse. In addition to playing the tuba, he also plays the bass guitar. Like most thirteen year olds, Tim also loves playing Golden Tee, video games, and chatting with friends online. Tim has also recently joined an online fantasy baseball league.
Speaking of baseball, Tim is a fervent fan of the Chicago White Sox. He tries to go to one or two White Sox games per year at U.S. Cellular Field, and he especially enjoys attending Elvis Night, an annual event where many fans go to the game dressed like Elvis Presley. Being one of the White Sox’s biggest fans, Tim was thrilled when they won the World Series in October 2005. Lastly, Tim loves to play golf and go bowling. In fact, Tim’s high game in bowling is an impressive 186!
Tim also has a philanthropic side. To raise money for kids to attend ostomy camp, he sells raffle tickets at the local ostomy association meetings. He also volunteers at Friends of Ostomates Worldwide (FOW), which provides ostomy supplies to ostomates in Third World countries.
Because Tim studies hard and applies himself during the school year, he welcomes the summer months to engage in some well-earned recreation and relaxation. Tim has enjoyed attending Double “H” Hole in the Woods camp, which is located just north of Saratoga Springs in upstate New York. This camp, along with the other Hole in the Wall Gang camps, is supported by the Newman Foundation. These camps provide children and teenagers who have long-term chronic illnesses the opportunity to take part in the overnight camp experience. During Double “H” Camp, Tim’s favorite activities included going horseback riding, attending a carnival, arts and crafts, and an excursion to a local amusement park. Tim was very impressed with how supportive and encouraging both his counselors and fellow campers were.
While Tim does not permit his illness to deter him from participating in the activities he enjoys, his movement can sometimes be restricted trying to bowl or play golf while being hooked up to his feeding pump and wearing a backpack. To get around this, Tim often opts to partake in these activities during the hours he isn’t hooked up to his pump or he adjusts his feeding schedule.
When asked how the Oley Foundation has helped him over the years, Tim said that he has met some good friends at the Oley conferences, and he appreciates the opportunity to talk to other teens close to his own age who face similar health challenges. In between conferences, Tim keeps in touch with them by phone, e-mail, and chatting online.
Lastly, when asked what advice he would give other kids and teenagers who are new to PN and/or EN feedings, Tim replied, “Being on PN or enteral feedings isn’t the end of the world.”
2/6/2017 » 2/10/2017
Feeding Tube Awareness Week
2/18/2017 » 2/21/2017
Oley exhibit at A.S.P.E.N.'s Clinical Nutrition Week
Oley Regional Conference