My G-Tube Kid

Marissa Sweat Evans by Marissa Sweat Evans Additional Needs

Marissa Sweat Evans

Marissa Sweat Evans

I am a mother and advocate for my son as well as others with disabilities. My oldest was diagnosis with cerebral palsy, epilepsy and autism.

I was nineteen when I had my first child Jaylen.

He was born with some medical complications.

The hospital where I had him decided to transport him to another hospital, that specialized in neonatal care, the next morning.

Jaylen stayed in the NICU for a month before coming home.

While there some tests were completed.

Two of the tests led to them initially having to place a g-tube as well as do a Nissen fundoplication (basically a procedure where they wrap the stomach around the esophagus to stop you from aspirating).

One was to test his sucking reflex which led them to a swallow study.

The swallow study determined that he was aspirating and he was diagnosed with GERD (aspirating is when something enters the airway or lungs.)

Before placing the g-tube they placed a temporary feeding tube which ran through his nose, down the throat and into the esophagus that end in the stomach.

They used this method to feed him until they did the surgery.

Once the surgery was finished, I remember him having this tube coming from his stomach that looked like a water hose.

It was about two days after the surgery when they placed the g-tube.

After, they showed me how to use it. I was so afraid I was going to hurt my baby.

I had to stay overnight at the hospital to be monitored while feeding him.

They had to make sure I knew what I was doing before discharging him.

They had Jaylen on a two-hour feeding schedule doing bolus feedings (a feeding method in which you pour the milk in the syringe, connected to the extension which links to the tube placed in the stomach.)

Some people also call it gravity feeding because when holding up the syringe gravity pulls the milk down.

All I knew was - I had to do everything I needed to do to take my baby home.

After getting Jaylen home I had to show my family how to feed him. For the most part I was the only one to attempt it because, just like me, they were afraid of hurting him.

Now let’s fast forward to today. Jaylen is about to be thirteen years old and he is still tube feed.

He must get a swallow study done every year to check to see what he can and can’t eat.

Right now, he still can’t get thin liquids by mouth, but he can eat some foods.

I am very proud of his progress!

Most people think because they are g-tube they won’t be as healthy as other kids.

Well Jaylen is now eighty-two pounds and has always been chunky.

The best thing they could’ve done for him was to give him that tube. And I am a happy g-tube MOM!

 

 

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