When 10-month-old Miles Couture’s parents were first told she needed a nasogastric tube to get her food, “it was heartbreaking,” says her mother, Katherine. Miles, who was born just 26 weeks old, struggled with his ability to feed himself. But he seemed to be taking more from his mouth. “After a modified study of a barium swallow showed that it was still struggling (with fluid seeping into its lungs), ‘it felt a huge setback,'” says Katherine.
The NG tube feeds the baby’s nose: inside his stomach. But like many children, Miles soon removed the tube, which required a referral to the emergency department of Boston Children’s Hospital. The doctors replaced the tube, և Miles immediately removed it again. After several visits to the hospital, the family was exhausted and disappointed.
Practice makes perfect
Fortunately, Katherine and her husband, Steve, learned about the program, which was offered through a hospital modeling program at the Boston Children’s Aerodiocentric Center. Sarah Connery’s two-hour class, led by registered nurse Paige Kennedy, allows parents և caregivers to insert an NG tube into a child-sized mannequin.
“Nts can be very frustrating when managing their child’s NG pipe at home, especially when replacing it,” says Connar. To help families feel more confident with their child, he or she’s partners in nursing and social work teach them the necessary skills, guide them through the process, spend a lot of time on high-tech models who can cry, breathe, and even turn blue.
“We try to be flies on the wall, let the parents work together to install the pipe, to solve any problem,” Connar explains. After that, they ask the families about the experience. How did it feel? What turned out well? What would you like to do better?
A new sense of control
For Coutures, the experience was a game changer. “We were very confident in what to do, both at best and at worst,” says Steve. “The lesson saved us a lot of time – disappointment.”
Indeed, one day after class, Miles pulled out his NG tube again. But instead of going to the hospital, his parents were ready to replace it themselves. After several attempts, Steve successfully installed the pipe, a huge help for the family. “We learned that it was not really difficult, the risk of injuring our son was extremely low,” said Steve, who admits that they would probably remove the tube permanently without replacing it on their own.
The experience also gave Steve և Catherine a different kind of confidence. “As parents, we had so little control over our son’s health,” says Katherine. “This lesson gave us a sense of control. That’s the real gift. “
Today, Miles is gaining weight, like any child his age. And Catherine և Steve is grateful for the education: training. “I’m in touch with the families of newborns with NG tubes. Unfortunately, they have not received the level of support we have at Boston Children ‘s Center,” says Katherine. “This is such a powerful tool for families to have.”
The NG-tube training course is available to eligible parents and patient care at the Aerodigestive Center. Learn more.
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