Eight-year-old Katelyn Newell sat in a small wheelchair, holding her babydoll, Abby, while at the Riley Hospital for Children Heart Center on Thursday.
She smiled as she “pet” her cat, Tigger, during a video call using iPhone and FaceTime. “Baby — come here baby,” Katelyn said to the cat, which was back at her home in Terre Haute.
“Did that make your day?” asked her dad, Scott Moody, also in Terre Haute and at the other end of the video call. He tried to hold the cat so that Katelyn could see him.
Katelyn’s mom, Robin Newell, was right there, pushing the wheelchair and pulling the IV pole that carries Katelyn’s heart medicine. The 8-year-old also wears a heart monitor and can’t leave the floor.
Katelyn, who was born with complex congenital heart disease, is back at Riley, this time for an extended stay.
In late August, as the little girl’s health continued to deteriorate, Riley cardiologists decided it was time to get the process started for a transplant.
And now, Katelyn — and her family — are waiting for a donor heart.
An extended stay at Riley
Katelyn began her most recent stay Jan. 4, her mom said.
“It’s going well. When she’s got this medication running through her body, she eats more, and you can tell she’s more active,” Robin said.
The IV treatments at Riley used to keep Katelyn feeling good and healthy for about five or six weeks, but now she starts weakening after about three weeks, her mom said.
Despite being away from home, family, school and her cats, Katelyn’s spirits remain high.
“I think she is doing really great. It doesn’t seem to be phasing her,” Robin said. “She is excited. She’s ready for a new heart.”
Since her most recent stay began, Katelyn has been feeling better, eating more and has gained 3 pounds; she was up to 42 pounds Friday.
The nurses and doctors at Riley “are great,” Robin said. Also, volunteers have come in to read to Katelyn, tell stories and play with her; the floor has its own playroom.
No one knows when the transplant will happen. It could be a matter of hours, days, weeks or longer. Katelyn has five brothers at home, and it will be difficult for the family while the 8-year-old and her mother are away.
Robin plans to stay with Katelyn through the week, and return home weekends to be with her sons. “It’s hard on me because I go home and then I have to leave them,” she said. But likewise, it’s hard to leave her daughter at the hospital.
Other family, including grandparents, are helping make it manageable. Also, on Tuesday and Wednesday last week, Newell’s cousin, Kari Gardner, stayed with Katelyn while Robin had to be in Terre Haute.
The reality of the situation probably hasn’t kicked in for the boys “because we haven’t been gone that long,” Robin said.
As for the mother, “I’m staying strong for Katelyn.”
Classtime brings a sense of normalcy
Each day from 1 to 2 p.m., Katelyn has study time with Lindsay Waymouth, a Riley educational liaison and certified teacher.
Waymouth stays in touch with Katelyn’s teacher at Deming Elementary, Sandra Childress, who faxes homework and assignments. Robin Newell has brought all of Katelyn’s school books to Riley.
Waymouth tries to do what Katelyn would be doing at Deming “so it brings a sense of normalcy to her,” she said. “I think it gives her a purpose every day.”
Teacher and student are focusing on math, language arts and reading. “We try to keep up as much as possible,” Waymouth said, although they don’t push it if Katelyn doesn’t feel well.
“So far, we’ve gotten a lot done,” Waymouth said, adding that Katelyn is determined to keep up with her class and really motivated to continue to do well in school.
Waymouth describes Katelyn as “such a ray of sunshine. She smiles the whole session. We both crack up at each other.”
On Thursday, they worked on math flashcards, reading, a memory book and other activities. Katelyn’s bed was in an upward position, and occasionally she would put her little feet on the tray in front of her.
“Let’s put those toes down,” Waymouth said, but Katelyn would sneak them back up. Waymouth told Katelyn that when she earns five stickers, she will receive a surprise.
Katelyn was a little distracted by some visitors, and started adjusting the bed downward, and then back up.
Robin Newell tries to stay out of Katelyn’s room during classtime so the 8-year-old focuses on her studies.
“Mommy, come in,” Katelyn said assertively at one point.
“Are you going to be good?” Robin asked her daughter.
Justin Bieber has a presence in Katelyn’s room, too, courtesy of a large wall poster, to a life-size cardboard cutout, to a blanket on her bed with a large photo of the pop music superstar.
At the end of classtime, Waymouth let Katelyn use an iPad to play educational games, and then some not-so-educational ones, including Power Rangers and a bubble popping game.
A cupcake for the doctor
As Katelyn spent time in the playroom, cardiologist Dr. Robert Darragh stopped by. He sat on one of the small chairs in the room as Katelyn pretended to ignore him, but she had a big smile on her face.
At one point, she placed a little bowl on his head, then later, offered him a play cupcake that she had “baked” for him.
Darragh is just one of the doctors who makes up Katelyn’s medical team. He’s been involved with her care since she was a baby and did her heart catheterization procedures.
He explained that Katelyn was born with complex congenital heart disease. Her pulmonary valve never formed in her heart so her right ventricle never grew. “She has one pumping chamber in her heart instead of two,” he said.
Unfortunately for Katelyn, he said, “Kids with this heart defect also can have a problem with how the coronary arteries form,” and the blood supply to the heart muscle can be compromised.
Now, he said, her heart muscle has become weak to the point that Katelyn gets tired out very easily. She does respond to IV medication given to her at Riley, “and that holds her for a little while,” he said.
She’s also had some heart rhythm problems, called bradycardia, which is why she received a pacemaker earlier this year, the cardiologist said.
“Her heart rate would drop abnormally low and because of it, she would get dizzy and lightheaded and passed out a few times,” he said.
Now, given Katelyn’s declining condition, she needs a heart transplant, Darragh said.
Her coronary abnormalities are progressive, he said, and there is nothing surgically that can be done to correct that.
Her heart function has been declining, and it’s expected that it will continue to decline, he said. “It’s a question of time before she would get to a point where her heart can’t sustain her anymore,” he said.
With a new, healthy heart, “She’ll have a lot more energy than probably she’s ever had in her life,” Darragh said.
For now, family and friends anxiously wait, hope and pray for the gift of a donor heart and a healthy childhood for Katelyn.
Sue Loughlin can be reached at (812) 231-4235 or firstname.lastname@example.org.