By Maureen Gilmer, Riley Children’s Health senior writer, firstname.lastname@example.org
A tiny, plastic creature comes flying out of the hospital room, rolling into the hall and skidding to a stop just as visitors arrive.
The green guy’s name is Gekko from PJ Mask fame.
Inside the room squeals a little boy attached to a machine that keeps blood flowing to his failing heart.
The boy’s name is Adriel Hernandez, famous in his own right on the Heart Center at Riley Hospital for Children.
Together, the two are having some kind of imaginary battle, but only Adriel knows the rules. The 2½-year-old sorts through more toys on the floor of his hospital room as the game continues.
Soon there will be even more noise and more toys. Adriel’s brother, Josue, 4, and mom, Glenda Hernandez, arrive after dropping off the boys’ big sister at school. The family, which includes dad Josue, is from Nappanee, Indiana, but they are moving to Indianapolis to be closer to Riley.
The brothers get lost in the world of play while nurses, therapists and aides peek in to say hi amid the chaos.
This is a pretty average day for Adriel, who has been inpatient at Riley since May. Diagnosed with hypoplastic left heart syndrome while still in his mother’s womb, he underwent open-heart surgery at Riley when he was just 1 week old.
Since then, he’s been in and out of the hospital as his heart function has continued to decline.
In June, Adriel was put on the Berlin Heart, a pump that helps maintain blood flow in cases of heart failure. By July, he was on the transplant list.
Now he waits. His parents wait. His care team waits.
“It was really hard at first,” Glenda Hernandez said about the thought of her little boy getting a heart transplant. “You don’t know how his body is going to react. That’s the scary part.”
Adriel is oblivious to most of this worry, of course. But he has his moments. He has certain triggers in the hospital, his mom says, like going near the elevator (which might take him to surgery) or seeing an unfamiliar team member.
For a while, he would blow kisses to the food service team when they dropped off his meals, but he wanted to keep nurses and therapists an arm’s length away. Now he engages with everyone.
He’s been known to have a few meltdowns, but today, he’s excited to see physical therapist Meredith Parks, as she pops in to invite him on a walk.
First, he has to grab his Woody hat (a “Toy Story” favorite), then she has to put on his gait belt, unscramble the wires attached to him and make sure his Berlin Heart, nicknamed JJ (for a character in Cocomelon and for cardiologist Dr. John Parent), comes along for the ride.
And then they have to step around all the toys Adriel and his brother have scattered on the floor.
Checking to be sure his mom is right behind him, Adriel, clutching Gekko, steps out into the hallway with Parks and an entourage of fans.
He’s popular on the unit, and his hat is an attention-getter, but Glenda remembers when just getting out of bed was a struggle for him.
Parks remembers too. Her job is to keep him conditioned so that he remains healthy for transplant.
“When he first got his Berlin, he was not this mobile,” she said. “He did not want to play or get out of bed, so we’ve come a long, long way. We want him in the best functional spot for transplant.”
As they make their way to the playroom on the third floor, he stops suddenly and begins to cry, prompting his mom to pick him up and reassure him.
It’s hard on her heart to see her baby going through this, but she hugs him, kisses him and tells him it’s going to be OK.
In the playroom, he busies himself making pretend waffles and waving to nurses passing by. Asked a question by Parks, he strikes his “thinking pose,” guaranteed to get him laughs.
“He’s always been dramatic,” Glenda said. “It’s always been his way or the highway.”
Ever since he was diagnosed when she was pregnant, she said she’s had a sense of peace that he’s going to be OK.
“I know God has a plan. I just hope he gets a good heart and has a good, long life.”
The cardiology and heart surgery program at Riley Children’s Health is ranked among the best in the nation by U.S. News & World Report.
Photos submitted and by Mike Dickbernd, IU Health visual journalist, email@example.com
She has a heart baby at home and the Riley team “in her back pocket” - As part of Riley’s cardiology home-monitoring program, 5-month-old Adriel Hernandez is able to be home with his family while a care team follows his progress virtually.