Magazine article The Exceptional Parent

Parents Perspective: Caring for a Child with a Feeding Tube

Magazine article The Exceptional Parent

Parents Perspective: Caring for a Child with a Feeding Tube

Article excerpt

Mealtimes are about a lot more than just the food we are eating, and excluding a person from this socialization and bonding time just because they can't eat like the rest of the family can be hurtful and psychologically damaging to the entire family. Look for ways to bring back the joy of food and mealtime!

" IT TOOK US A LONG TIME TO GET HERE, BUT WE NOW SEE AJ'S FEEDING TUBE AS AN INTEGRAL TOOL IN KEEPING HIM AT HOME AND HEALTHY."

Our son has, and gets all of his nutrition from, a feeding tube. Serving nutritious food that everyone will eat is hard enough for any family at mealtime, but caring for a child with a feeding tube presents a new set of challenges.

We were thrown into learning about feeding tubes very unexpectedly when our second child, AJ, had a 45-minute seizure when he was six months old. He had to have a feeding tube placed due to suspected aspiration after seizures. Interestingly, most feeding tubes are placed not because the digestive system doesn't work, but because the person can't safely get food into their stomach. Chewing and swallowing are complex neurological functions that can be compromised due to a number of conditions and factors.

Estimates put the number of people living at home with a feeding tube in the United States at 500,000 to one million. Chances are you know someone who has had a feeding tube for nutrition at some point in their lives. There's been a marked increase in the number of feeding tubes placed over the past 15 years, primarily due to medical advances keeping people alive longer than ever before. Think of NICU babies, those with ALS or certain oral cancers - the feeding tube extends the life of many with these conditions.

Now, almost six-and-a-half years after AJ had his tube placed, the day-in-the-life picture of our family probably looks very similar to most, with the big exception that AJ cannot walk or eat with his mouth. These physical limitations, along with his inability to verbally communicate his needs, add a new level of complexity for dual-working parents with two school-aged children.

Feeding AJ through his tube has become the norm for us. Aside from the obvious health benefits of eating a diet of real, whole foods (no added sugars or preservatives in his diet, he NEVER complains about eating his veggies!)--we also have no problems giving his daily medications, no arguments about AJ not liking something, and complete control over what goes into his body. It took us a long time to get here, but we now see his feeding tube as an integral tool in keeping him at home and healthy.

There are challenges we still face, such as going out to dinner as he gets incredibly bored sitting around watching us eat. AJ can't self-feed so every morsel of food he gets is fed by one of us. We have to watch for physical clues when he's full or doesn't want to be fed, and the psychological implications of not being able to nourish our son the same way we do our daughter and the social aspects of sharing family meals still impact all of us, even after all these years.

So what does a typical day look like for us? AJ's day begins between 5 and 6 a.m. For breakfast, we give him two seizure medications, eight ounces of water, 16 ounces of his blended food and then flush with a little more water. We syringe (bolus feed) AJ using two-ounce syringes so between the two medicine syringes, we are drawing up and pushing another 12 syringes within this hour. …

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