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 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.
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.
Charla Kingsley, RN, INP
While Charla is at Lexie's side during her difficult
hospitalizations, operations and recovery, Angels in Waiting, USA will be at Charla's side; helping with her bills while her job as an INP is on hold. Angels in Waiting stands behind Charla supporting her decision to bring Lexie into her life and home and supporting Lexie's need to have her mommy/nurse at bedside during the difficult times.
Please help Angels in Waiting, USA help these two special Angels.
Thank you for saving a childhood!
