Adrian’s Story
Adrian, known to all of us as "my boy" or Audie, was brought to his
home from the Mercy NICU when he was 8 months old. He was on a
ventilator with a tracheotomy, gastrostomy and lots of oxygen. He
was very unstable for months, but after about two years he was able
to be weaned off the ventilator and the oxygen. He also had his
gastrostomy removed when he was 1 1/2 years old because he was
eating so well, and when he was just over two years old, he had his
tracheotomy removed. Adrian still has nursing 10 hours a day, five
days a week due to asthma, but is otherwise a normal and healthy
four-year-old. He goes to pre-school, and surprised his teacher by
being the most articulate child in her class. He loves to read,
especially about animals, and he loves horses, especially the Black
Stallion and Spirit. Adrian also enjoys going to Debi's farm to ride
on the golf cart, chase the peacocks and fish in the pond.
Rylie’s Story
Rylie is a 16-month-old little girl we’ve had for 13 months. She has
spina bifida, a tracheotomy, gastrostomy and skilled nursing 16
hours a day. Rylie, who is paralyzed from the waist down, lives in
West Des Moines with her parents and older sister. She can sit on
her own, is starting to eat big people food, and plays “Patty-cake”
and “Sooooo-big.”
Kyer’s Story
Kyer, who weighed just over two pounds at birth, had an uneventful
two-month course in NICU at Mercy. He went home on oxygen by nasal
cannula and stayed on it for a few months before he was able to be
weaned off. Kyer is now a totally normal two-year-old who eats, runs,
talks and climbs without problems, is currently potty training, and
has caught up with his peers in all aspects. His twin sister,
Kinsey, still receives skilled nursing 10 hours a day, five days per
week from us.
Janina’s
Story
Janina has been our client since she was about 5 months old. She
came home from the Mercy NICU with a tracheotomy and oxygen because
of tracheal stenosis. She currently has a home health aid. Janina,
who at four years old, has had her trach removed for two years, and
plays like any other four-year-old child. The only consequence is
that she needs to have laser surgery a couple of times a year on her
vocal chords to eliminate scar tissue. She lives in Des Moines with
her parents and two older siblings.
Ashyln’s
Story
Ashyln is an 8 year old born with Charge Syndrome. She is a
delightful girl who is deaf, has a tracheotomy, a bleeding disorder
and receives nutrition through a G-tube. At night and during naps
Ashlyn is on a ventilator, and while awake, she’s on humidified air.
Her daily nursing care consists of continuous feedings, nebulizers
two times a day, chest pt four times a day, medications, and
assessing her environment for obstacles and risk of injury due to
her bleeding disorder. She has a port-a-cath implant through which
she receives IVIG every 3 weeks, TPN for 7 days a month and Humate
when she shows signs of bleeding. Due to her Charge Syndrome, Ashlyn
is unable to regulate her body temperature requiring frequent checks
of her temperature, especially when the environmental temperature is
extremely hot or cold.
Ashlyn has learned to communicate through ASL. She recently received
a cochlear implant and when it is on she enjoys hearing sounds and
has become more verbal. Ashlyn also receives year around home-bound
schooling through the public school system where she lives. |
