The Culture of Different MKTG_150064494_2018 Service Line Big Book Full_FIN | Page 56

The Cannula that Saved Kylie
Pulmonology • Cardiology and Heart Surgery • Pediatrics
“ Kylie was to the point where, if her pressures got any
worse, she’d need a valve repair. And there was
a good chance there would be complications.”
F R A N C I S H I C K E Y, M D
Medical Director, Anna and John J. Sie Center for Down Syndrome
“It probably saved her life,” Dr. Hickey says.
Kylie’s example is extreme, but thousands of kids
around the nation stand to benefit. At Children’s
Colorado alone, more than half of the kids the
Sleep Center sees for apnea can’t tolerate CPAP.
Not all of them would benefit from AIRVO — since
Kylie’s study, the team has found it doesn’t work
for everyone — but many of them would. That’s
especially true for infants and toddlers, whose
faces are too small for CPAP masks.
“Many of these kids did even better than we
thought they would,” says respiratory therapist
Kathy Simar, RRT, RPSGT, who runs the AIRVO
studies. “I think this could have many more uses
than what we’re doing now.”
What Kylie can do
Now 12 years old, Kylie is one of the AIRVO’s
longest-standing pediatric patients, and she’s still
doing well. She has more energy. She gets sick
less often. She hasn’t had an unscheduled hospital
stay in two years. With all that spare time, she
likes playing with her “flippy,” a homemade toy she
fashions from a ribbon or strip of newspaper tied
to a pencil — but she spends even more time being
active. She rides horses and a three-wheeled bike.
With some help from a 50-foot ox ygen cord tied to
her wrist, she dances ballet. She runs. A lot.
That’s largely possible because of the backpack
she now wears to carry her oxygen tanks,
suggested last year by Dr. Ivy. The setup allows her
more independence and freedom of movement
than she’s ever enjoyed before.
“She loves it,” says Stephanie. “We went to a
cousin’s wedding, and she was on cloud nine.
She could run around and dance all she wanted.”
“As far as our routine, it was just a normal
burden that went away,” notes Beau. “The two
of us could never really enjoy family gatherings.
We’d worry about all these people not used to
being around an oxygen cord, so we’d spend the
whole outing running around making sure it
wasn’t tripping anybody.”
Kylie has a lot going for her. She’s mobile. She
can feed herself. She can read a book. With her
basic needs taken care of, she can realize her full
potential, and her family has a lot of hope. They’re
not the only ones.
“Dr. Hickey always says, ‘Oh, she’s going to hold a
job. She’s going to do well. She’s going to amaze
you, how much she can do,’” says Beau. “There’s
always been such a positive outlook for her. So
we’re just trying not to limit her. We want to give
her all the options and see what she can do.”
Because she couldn’t tolerate a CPAP mask, Kylie Tatro’s
nighttime oxygen concentrations were dangerously low, which
was making her pulmonary hypertension worse. These days,
she’s dancing ballet. Teacher helper Elleann Kohl helps Kylie
through the steps at her ballet class in Wichita, Kansas.
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