Alexia was born prematurely with a condition known as Gastroschisis.(
See Photo) Her intestines had formed outside her abdominal wall
and the wall had closed up around them, choking them from blood
supply and systematically poisoning her. Lexie's intestines were
black and dead; only four inches of viable bowel could be saved and
had to be surgically attached to her transverse colon. The loss of
bowel makes it impossible to absorb the nutrients needed to sustain
life so she requires an IV infusion of Total Parenteral Nutrition (TPN)
that runs through a large blood vessel in her chest twenty hours a
day - an intrusion that is hard on the veins and makes her prone to
bacteria that cause blood infections. Numerous line placements for
the IV have caused scarring and taxed the liver like excessive
alcohol and a toxic lifestyle would.
Her liver and kidneys are further taxed by the antibiotics necessary
to fight a host of infections. She has anemia because her kidneys
aren't working up to par, so I infuse IV Iron to help that and give
her a shot every week to build up her red blood cells. Her gut is
"leaky", so bacteria easily seep through the intestinal wall and
cause blood infections. The short length of her intestines means
that the normal amount of immunities can't be produced so I infuse
an immunity drug called IVIG every two weeks at home to help build
her immunity. She likes to suck the flavor out of food rather than
swallow, so it was necessary to put a Gastric Tube (GT) in her
stomach for feedings and for medications that are impossible for her
to swallow.
When I first cared for Lexie in the Pediatric Intensive Care Unit of
a major hospital, she was eighteen months old and weighed a scant
twelve pounds. She had just been admitted with yeast growing in her
blood. Her hair was brittle and had a reddish tint mixed into the
black hair - a tell tale sign of nutrient deficiency.
She had been living in her second Medically Fragile Group Home but
had been in the hospital so frequently with blood infections that
she had not had the time to bond with anyone from her new Group
Home.
Alone in the ICU, she was frightened and had learned to avoid eye
contact. She had a flat affect when nurses and doctors talked to her
and had learned to protect herself by withdrawing from us. She cried
and struggled to get back to the safety behind the bars of her crib.
When I reached in to pick her up, she used sign language to tell me
to pull the bars of the crib back up. She had inappropriate
attachment; once held and rocked, she did not want to let me go. The
next day, she chose someone else to attach to.
During the course of her six week stay in the hospital, my
attachment to her grew steadily and I took the steps necessary to
become her at-home nurse and adoptive parent. When I brought her
home to live forever, she chose my oldest son Dylan to attach to (See
Photo) and called him "Mommy" for two months. She became
possessively jealous of my younger son and would not allow any other
kids to touch him or come too close to him. She would furiously
crawl as fast as she could across the floor to remove the
"offender's" arm from her Seany. (See
Photo)
She was so used to avoiding eye contact to protect herself that it
delayed her ability to walk to twenty-three months, and I had to
teach her to keep eye contact with me.
In the years I've had her, she has blossomed into an incredibly
intelligent, beautiful four year old girlie girl with no fear of
people. She talks endlessly, runs, laughs, smiles and finally shares
her brother, knowing she is secure in his love.
I packed her two IV pumps into a tiny, wheeled backpack so she can
get around. We pick a different cartoon character and color scheme
daily depending on her outfit! She's able to pull the backpack all
over the place - chasing her puppy, shopping at the mall, banging up
the stairs at home, running after - or from - her brothers.
She is still tiny - only twenty-seven pounds, but she is so proud of
her muscles. She bunches up her little arms often to show me she is
getting stronger and taller like her brothers.
I am thrilled to be able to provide Alexia with a life beyond the
hospital and institution - a life where she can sleep in a big doll
house bed in her own room and have cousins and siblings to play and
grow with; a life where she is able to go on vacation, go to the
zoo, play in the park, delight in the joys of shopping and relish in
the love that surrounds her.
When Lexie has her organ transplants, I will be out of work for six
months as she recovers in the hospital in Pittsburgh, Pennsylvania,
a long way from southern California. As a single mother, I am my
family's breadwinner and, of course, this is worrisome. Yet, Lexie
needs me at her side; she has come so far and now knows what a
"mommy" really is! When she first began talking, she would shriek,
"We Home! We Home!" when we pulled up to our house. She knows she
will NEVER be alone in the hospital again. When Lexie has her major
surgeries, I will be at her side holding her tiny hand.
She has not conquered every medical milestone in front of her. There
are more than several organ transplants in her near future. At least
with me as her advocate and being able to care for her in my home,
she is long over the surprise in seeing the same "nurse" greet her
when she wakes each morning and is more prepared for the challenges
ahead. I am her mommy. I am her nurse. She is my love. (See
Photo)
Charla Kingsley, RN, INP
Please help Angels in Waiting, USA help these two special Angels.
