My Tubie Kid :: What It’s Like Having a Child With a Feeding Tube

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This week is Feeding Tube Awareness week.

A tubie is someone who require a feeding tube for their nutrition and medication. There are several different types of feeding tubes. The one my son currently has is called a Mic-Key low profile gastrostomy feeding tube.

My son Jaylen has been a tubie all of his life. We found out he was aspirating a few days after birth. (Aspiration happens when food, liquid, or other material enters a person’s airway and eventually the lungs by accident.) After the doctors saw he was aspirating, they fed him through a feeding tube. This particular feeding tube went through his nose. It’s called a nasogastric tube (NG tube) it carries food and medicine from the nose to the stomach. 

A few weeks later he had surgery to get a feeding tube placed in his stomach. For the first couple days he had this long tubing coming from his stomach. A few days later they placed a G button. Before he could come home I had to stay in the hospital with him overnight to make sure I knew how to care for him, which included knowing how to feed him through his tube. Just like any other newborn, I had to get up every two hours to feed him. I would give him water before and after the feeding. 

There are two ways you can feed through the feeding tube. You could do bolus feedings, where a syringe is used to send food through your feeding tube or you could use a feeding pump. Jaylen has used the feeding pump before but after getting so active we now only do bolus feedings. As a baby we used baby formula to feed him but as he got older it changed to “big boy milk,” as I call it. 

There is a test he has to take called a swallow study. This test is used to determine whether or not he’s still aspirating, as well as what things he can and can’t eat. During this procedure a speech pathologist must be present. They use an X-ray machine and barium so they can see where the food goes once he swallows it. We have had our ups and downs with this testing but it’s good to have. 

Another thing that’s very important about taking care of a tubie is changing the feeding tube. A feeding tube must be changed every three to six months. We usually change Jaylen’s tube every three months.

When Jaylen was smaller, I was always afraid to change his feeding tube myself. We would go the ER if he pulled it out or set up an appointment with the doctor if it needed to be changed. I think what scared me the most when he was smaller was the granulation tissue that would build up around the tube site. When this would happen the doctor would give me silver nitrate sticks. Silver nitrate is a topical skin product. Once activated with water or body fluids, the chemical (silver nitrate) works by burning off the skin or tissue. This causes the skin or tissue to die and fall off. 

As Jaylen got older and I got more comfortable with his feeding tube, I was able to change it out myself. And it doesn’t take long to do as long as he’s cooperating. Most times it’s a two to four man job. All hands on deck, as they say.

I find tube feeding to be easy. It doesn’t require much work unless Jaylen is putting up a fight. I’ve been a tube feeding mama for sixteen years now. And I enjoy every minute of it. 

Is your child a tubie? What has your experience been like?

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Marissa Evans
Marissa was born in Charleston, South Carolina on Sept, 27, 1986 to James Sweat and the late Tracy Graham. She is the youngest girl of six, two sisters and three brothers. She grew up in Holly Hill, and graduated from Holly Hill Roberts High. Marissa furthered her education at Midlands Technical College, receiving a certificate in Early Childhood Education in 2017 and an associate degree in Early Childhood Education in 2018. She has been married for seven years to her husband Terence Evans. Together they have three children (Jaylen, Jada and Ny’Asia Evans). Her oldest and only boy, Jaylen, has cerebral palsy, epilepsy, and autism. Marissa and her husband are also the founders of the movement #Dontstare which is to raise awareness to how rude staring can be.

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