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Fear of food

Jayden Preston relies on a feeding tube to survive as his family and health care providers help him overcome eating issues
by: Jaime Valdez Jayden Preston holds up his shirt to show off ‘his button,’ the port for his MIC-KEY feeding tube. The tube has enabled the 4-year-old to grow and thrive as he battles intense sensory issues to food.

Jayden Preston is a medical mystery for his health care providers.

Within moments of watching the energetic 4-year-old South Beaverton boy interact with his younger brother Liam, he appears a typical, healthy, active youngster.

He enjoys kicking the ball around a soccer field, fighting for control of what program to watch on the television, practicing his letters with colorful markers, showing off his treasured possessions and good-naturedly roughhousing with his best buddy and father, Josh Preston.

Meeting Jayden for the first time, you would never guess he's dealing with a very serious issue and relies on a feeding tube to survive.

Two years ago, Jayden refused to eat or drink with his mouth. No matter how much his parents pleaded with him to try to eat something - anything - their son would not swallow, instead gagging and averting his face.

While as an infant and toddler he would consume milk, some purees and Pediasure, one day he simply stopped and went an entire day without ingesting any liquids.

'As a parent you are told that when your child is hungry, he will eat, but that is not the case with Jayden,' said Courtney Preston, his mother.

Refused to eat

She recalls the February day when her family's life took a drastic turn.

'He went all day with nothing in him, and the next day we tried begging and pleading with him to eat,' Courtney said. 'He was so lethargic.'

'We even offered him chocolate pudding and tried making deals for toys or taking the soccer ball outside,' her husband Josh added. 'Nothing worked.'

The concerned parents took him to Providence St. Vincent Medical Center, where Jayden was admitted with a dangerously low blood-sugar level that could have led to a seizure.

'We were there for a week, and during that time, so many doctors came in trying to figure out what was going on,' Courtney recalled. 'They were fascinated by him and ran so many tests, including a swallow study. He could swallow just fine. He just refused to eat.'

He was discharged from the hospital with a nasogastric route tube, which is passed through the nose, down through the nasopharynx and esophagus and into the stomach.

'It was a nightmare,' Courtney said. 'He was not happy.'

Jayden, who was already displaying signs of strong sensory issues with touching certain items that are wet or have specific textures such as condensation on a glass, sand or grass, did not like the feel of the tape securing his NG tube to his face. He also had a hard time being asked to sit still for 45 minutes at a time, while being hooked up to a machine four times a day to receive nourishment.

With Jayden still refusing to eat on his own and the NG tube option not working, Jayden's parents made the decision to have a MIC-KEY low-profile gastrostomy tube surgically implanted in his stomach to help him receive necessary nutrients.

'It was either elect to do the surgery, or lose him, which wasn't an option,' Josh said.

In the meantime, Jayden also began working with a developmental pediatrician to help him address his sensory issues.

'She is our Dr. House,' said Courtney, referring to the medical drama on TV. 'She's amazing and so smart.'

Jayden attends occupational therapy sessions and participates in a feeding group with other children, who rely on feeding tubes because of diagnosed medical conditions.

'His fear of food overcomes him,' Courtney said. 'If there is a plate of food in front of him, he asks you to please move it.

'We're trying to push through a mental block and his fear of food that are keeping him from wanting to eat.'

Big and strong

After overcoming his initial fear of the feeding tube poking out of his tummy, Jayden soon became used to it, calling it his 'button.'

For several months, Jayden was placed on a diet that consisted of Boost nutritional drinks, which were pushed through the MIC-KEY with the use of an IV bag attached to a stand. The process took about 45 minutes and left Jayden feeling heavy with an upset stomach.

'Jayden reached a plateau,' Courtney recalled. 'After 4 ounces of Boost, his head would be in the toilet. He didn't feel very well and had little energy.'

Wanting to see if there were other diets options, Courtney reached out to groups on Facebook, where other parents introduced her to a blended diet.

The Prestons decided to give it a shot last August and worked with a dietitian to come up with several recipes that included a healthy mix of organic, all-natural foods representing every food group.

'We were beyond excited to be blending real, healthy foods to create nutritious meals for him,' Courtney said. 'Even though he can't eat by mouth, we want him to still eat good stuff.

'When we started blending all his meals, we immediately noticed a change in his color and energy level. He also starting gaining weight. Now, we know what is going into him.'

As Jayden has gotten older, his parents have also encouraged him to be part of the decision-making process. Jayden offers input on what he wants to add to the mix in the blender, whether it's blueberries to turn the watery smoothy blue or goldfish crackers like his 3-year-old brother Liam happens to be munching on. In the grocery store and during trips to the farmers market, he also selects items to add to the shopping basket.

The new diet is also more convenient. It takes about 10 minutes to blend up a meal and stick it into a large syringe that Jayden can push directly into the port of his feeding tube into his stomach.

'We're hoping that by getting him involved, it will trigger his desire to want to taste something,' Courtney said.

Recently, they have experienced some success.

Jayden asked to try his mom's chai tea and milk during a trip to Dutch Brothers Coffee. He now will drink that beverage out of one of Dutch Brother's kid's cups.

His dad has also started trying to talk to him as an adult.

'I had a heart-to-heart with him and told him that if he wanted to be big like his older brother Noah, who lives in Idaho, he needed to learn how to eat with his mouth,' Josh said. 'I asked him if he could try, and he agreed to take one or two bites of yogurt.'

'We both were crying with joy - it was a breakthrough,' Courtney recalled.

After those first tentative bites, Josh took Jayden to the store to let him pick out a variety of yogurt flavors to try. In the last week, Jayden has started to eat a tub of yogurt every day when the family sits down for dinner. It's a big step forward for Jayden.

'Our hope is that his mental block and fear of food will go away or his sensory issues will calm down,' Courtney said. 'Someday, he's going to eat. He will eat - he's already started.'

Josh nods in agreement. 'I don't care what it is,' he added. 'Even if it's pizza, we'll be eating it every day.'

Looking over at Jayden, Josh asks his son, 'How do you get big and strong?'

'I got to eat with my mouth,' Jayden replies.

'Who do you want to get big and strong like?' his father asks next.

Without skipping a beat, Jayden grins and says, 'Noah.'



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