NavigatingLifeWithLMS

 

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The idea of a feeding tube can be a little off-putting to the general public. On the flip side, to the medically complex and chronically ill, a feeding tube can be a blessing in disguise.

Follow along while I help you better understanding feeding tubes by dropping some basic knowledge. It’s not as scary as you might think.

What is a feeding tube?

A feeding tube is a tube placed through the abdomen, nose, or mouth as an alternate route for nutrition and medications. The tube either empties directly into the stomach or intestines, depending on needs of the patient.

Why a feeding tube?

There are many reasons why an individual might need a feeding tube. Here is a list of just few examples:

• Premature baby
• Cleft palate
• Trouble gaining/keeping weight
• Inability to swallow
• And many more

Common myths about feeding tubes

There are quite a few myths surrounding feeding tubes. Here are some myths and the actual facts:

Myth: Feeding tubes are permanent.
Fact: While feeding tubes may be a permanent solution for some, that is not always the case. A feeding tube can be removed once it is no longer needed.

Myth: individuals with feeding tubes can’t eat by mouth.
Fact: Some people are physically unable to eat by mouth. On the other hand, some people only use a feeding tube for medications or supplemental nutrition.

Myth: Only formulas can be used with a feeding tube.
Fact: A feeding tube may be used for Smoothies, medications, thinner pureed foods, and any edible liquid thin enough to pass through the tube.

Myth: individuals with feeding tubes have physical activity limitations.
Fact: Even people requiring a feeding pump for continues feeds can still enjoy physical activities. Individuals with feeding tubes are even able to participate in water activities!

How do I know about feeding tubes?

My daughter Kailanie was born with an extremely rare syndrome, Lateral Meningocele Syndrome (LMS). As a part of LMS, Kailanie had a cleft palate. She was also admitted to the hospital for failure to thrive before she was two months old.

Until Kailanie received a NG tube (a tube through her nose leading into her stomach), she was burning more calories breastfeeding and bottle feeding than she was taking in. When Kailanie was about four months old, she received a G-tube (a tube leading directly to her stomach via a hole in her abdomen). She still has her G-tube to this very day.

How is a feeding tube a blessing in disguise?

I was scared at the initial thought of my daughter having a feeding tube. Like many others, I was worried it would be permanent, or add too many restrictions to her activity. As you read in the myths above, that is not true. In fact, Kailanie takes most of her nutrition by mouth. She even participates in swimming, climbing, and many other activities.

The “blessing in disguise” part came about when Kailanie started gaining weight with the NG tube. The true blessing is not having to fight with her to take necessary medications, especially when she was diagnosed with leukemia. We are thankful Kailanie has a G-tube during this childhood cancer journey. It has kept her medicated and fed.

The point?

I hope this article had raised your awareness regarding feeding tubes, and armed you with some basic knowledge. Maybe you can educate others and help them understand that feeding tubes can be a blessing in disguise.

Now, the only thing left to do with your new knowledge is to keep calm and love a tubie.

Now what?

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