The Simple Comforts that Eased Carter's Hospital Anxiety

Carter wants to make a $100,000 salary.

But as a seven-year-old, his money-making options are limited.

Pokémon card trading has become one of his favorite hobbies and income streams. With over 400 cards, he loves to buy, sell and trade them. When he’s feeling good at home, Carter loves the thrill of ripping open a fresh card pack - hoping he'll find a rare or valuable one.

But if he gets a snotty nose – he knows – it's not a good sign.

A snotty nose may seem small, but for Carter, it’s the sign of something bigger. He lives with cyclic vomiting syndrome (CVS), a chronic brain-gut disorder that he describes as when “my brain says, ‘you better vomit!’ Then I vomit.” And it continues until he gets a stomach bleed or enters a state of malnutrition and dehydration.

Last year, he was admitted to the hospital 11 times - almost every month. His dad shared: "It's like living in a volcano zone." We never know when it's going to erupt. But when it does — our whole world stops."

And it did. Every month, like clockwork: it starts with a snotty nose, then vomiting. Then comes abnormal labs. And finally, hospital admission.

When he starts feeling unwell, he becomes so anxious and nervous that it makes him feel worse. His mom, Jen, explains:

“He thinks, ‘I’ll go to the hospital. I’ll get poked with needles. This will be terrible.’ He gets very anxious, and that anxiety makes him vomit more.”

Managing Medical Trauma in Children

Carter has significant medical trauma rooted in years of procedures – sometimes up to six pokes when he's dehydrated, constant nebulizer treatments and being stilled for procedures.

His anxiety is a lot higher when he’s at the hospital. He’s understandably nervous around hospital staff. For much of his life, care has been decided for him. When Jen has conversations with the hospital staff, he can understand parts of the conversation, but the gaps in understanding – especially when he can’t follow at the same level as the adults – make him anxious.

Carter knows that when Jen agrees to let someone put a line in his arm, she is doing it because she loves him — but at seven years old, it's not always easy to understand why the best care comes with pokes.

Carter’s way of coping is trying to leave the situation. The first time he needed to get a GJ tube put in, he ran down the hall, trying to run away.

The best that Jen can do is try to keep Carter safe and at home, let him just be a kid. But when hospital stays can’t be avoided, Jen has studied the architecture of his fear, building workarounds, one small comfort at a time.

Building Trust with Positive Hospital Experiences

Hospital gowns are associated with Carter’s fear of treatment. When Jen received a Mario-themed Hospital Gown from Starlight’s hospital gown program, it helped to create a more positive association.

"If he's walking in the hall with a fun gown on, he gets attention that isn't medical attention,” Jen shares. “They say, 'Hey, you like Mario? I like Mario.' Healing happens when medical staff play with Carter."