By Maureen Gilmer, IU Health senior writer, email@example.com
She’s known as #AmazingAva, and when you meet her, you can see why.
The 8-year-old spitfire holds court in her “apartment” on the heart center at Riley Hospital for Children, sparring with her nurses, dancing to pop music and giving everyone who will listen a rundown on Sonic the Hedgehog and dinosaurs.
She is seven weeks into her latest stay at Riley, and she knows she is here for the “long haul.”
Could be weeks, could be months, her mom says.
“Could be years,” Ava shouts.
Ava Graham is waiting for a new heart to replace her damaged one.
The second-grader is a veteran of multiple surgeries, including the three-part series recognized as the most effective at treating her congenital heart defect – hypoplastic left heart syndrome.
But for Ava, the last in the series – the Fontan – left the then-3½-year-old with airway complications that required her to get a trach to help her breathe.
“So we became trach parents and G-tube parents,” Jami Graham said. “We were 69 days in the hospital that year after the surgery.”
She was on track to have a procedure done at a Cincinnati hospital to address her airway issues when COVID canceled all elective surgeries in March 2020.
It wasn’t until spring of 2021 that doctors at the Indianapolis hospital where Ava had been treated for years mentioned the T word – transplant, Jami said.
“I was there alone. My husband (Jackie) wasn’t with me. I wasn’t expecting even the mention of transplant,” she said.
But the wheels were set in motion to transfer Ava’s care to Riley, which is well-known for its expertise in pediatric heart transplant.
That’s when Riley cardiologist Dr. Robert Darragh and transplant coordinator Debbie Murphy stepped into their lives.
Jami said the Riley team decided it was best to eliminate the trach before transplant due to the risk of infection.
So, in an effort dubbed Operation Airway, Dr. Bruce Matt performed a major tracheal reconstruction and removed the trach tube last fall.
Ava, who said she wants to bury her trach tube in a tiny coffin, still has some airway issues – “I snore,” she says – but the team is hoping she can get matched with a heart before they work on her airway again.
“After transplant, when her body is happier because she has a whole heart, they feel she will recover better from any airway stuff,” Jami said.
For now, Ava has made her hospital room her home, complete with artwork, posters, pictures, toys, blankets, a Nintendo, iPad and lots of little pairs of slippers.
Jami spends each day with her little girl, while Jackie comes up after work and spends the night. It was a schedule the couple worked out early in their daughter’s last lengthy stay.
“We’re lucky we’re local,” she said. “I love the fact that I get to go home at night and come back in the morning. I tried to stay here overnight last fall, and I couldn’t sleep. I was a mess. My husband sent me home. He can sleep standing up.”
The fact that Ava feels pretty good for now makes the hospital stay easier, her mom said. The two go for walks around the unit, and Ava has made friends with a couple of other patients. She draws and colors, plays games, works with her therapists and watches a lot of movies.
Asked about the hospital food, Ava says the pizza is “the bomb,” but a jar of Hershey kisses sent by her great aunt is fueling her between meals.
As she moves around the room, schooling her visitors on her dinosaur collection, nurse Nate May walks in, and Ava gets into her fighting stance.
“What is this? Attack mode?” He laughs and assumes the same stance. The two look like they are waiting for the opening bell in a wrestling ring.
“I’m not supposed to fight patients,” he jokes. “Are you having fun trying to be famous?”
May, a favorite with many of Riley’s heart patients, says Ava is spirited and fun.
“She loves music. She is jamming out here most days to pop songs, and I love it. I get these obnoxious pop tunes stuck in my head.”
Together they list some of her favorite artists – Bruno Mars, Taylor Swift, Katy Perry, Maroon 5.
“Seriously, I love her personality. The first time I had her as a patient, she had a KitKat and a Pepsi for breakfast and she inspired me,” he joked. “I’m like, I’m not doing life right.”
So the next week, when there was candy on the unit for nurses week, he admitted he had a KitKat and Monster Energy drink for breakfast.
“Just don’t tell my mom,” he whispered.
Ava laughed out loud.
As she watched her daughter and the nurse continue to spar, Jami considered how she will feel when she gets that call that a heart is a match for her little girl.
“It’s bittersweet really. I want the call to come obviously, because I want to take her home, but when that call does come, it’s gonna be like – oh my gosh, it’s happening.”
Riley’s cardiology and heart surgery program is ranked fifth best in the nation by U.S. News & World Report. It is the Midwest’s top-ranked hospital for children’s heart care.
Photos by Mike Dickbernd, IU Health visual journalist, firstname.lastname@example.org