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Sammy is a true medical miracle! Sammy is not my biological son. I know the deep piercing bond a son from my womb can bring. I love my Sammy just as deeply. Sammy was born a full four months early at the fragile weight of 17 ounces when his birthmother's placenta burst due to her addiction to methamphetamines and landed her in the hospital. When he tested positive for methamphetamines, Sammy was taken into the custody of Children's Services; his mother's rights were suspended until she tested negative for the drug. His premature delivery meant his organs were not developed enough to sustain his life. His lungs were so underdeveloped, he couldn't take his first breath. His brain and nervous system were so undeveloped they couldn't remind him when he needed to breathe.
He survived for the next 16 months in the hospital under the care of medical personnel utilizing mechanical ventilation and IV drips, while he fought his mother's drug addiction. He rapidly produced hundreds of hemangiomas on the outside of his body and thousands more on the inside that impeded the natural function of all his organs. This subjected him to several years of chemotherapy. To the amazement of hospital staff, he endured seven painful abdominal surgeries and survived four, long, close-call resuscitations. Sammy was continually pricked with needles. He was so troubled by this he slept sitting up. Afraid to relax into dreamland, he poised for his next onslaught of cold, painful medical procedures delivered by sterile hands and blue scrubs.
Against extraordinary odds, Sammy continued to fight for his life, alone, without the emotional support of a nurturing mother. The severity of his illness, medical costs and a grim prognosis prompted doctors to request a "Do Not Resuscitate Form" be signed by the appointed court judge. Thankfully, the judge refused, and Sammy continued to make use of the hospital's personnel heroic resuscitation efforts. Miraculously, and to the continued amazement of the nurses, therapists and physicians charged with his care, he stabilized enough to be discharged from the hospital.
He was placed in a group home for medically fragile children where he was able to bond with other children who were fighting incredible fights of their own (see Alexia's Story). Six months later, after a long career in child care, the owner of the group home was to retire. She was frightened that if Sammy ended up in the local institution he was slated for, he would shrivel and die. She called me on Thanksgiving Day when she'd heard I was a veteran pediatric nurse and now certified as a medically fragile foster parent. Convinced Sammy wouldn't make it without a vital infusion of love and heartfelt dedication, she urged me to take him into my home. Several days later, he crossed the threshold of my doorway, infusing me with the wonder of his survival.
In less than three years, Sammy has moved from indwelling catheters, feeding tubes and numerous daily medications to being tube and medication free. He is a brilliant, cognitively gifted and active nine year old boy who enjoys every aspect of his precious life and has an exceptionally gentle, sweet soul.
In 2007, my husband and I adopted Sammy, securing his promising future and enriching our lives beyond the expectations we mulled over when we started this journey of safe-housing tender souls.
Sammy is a true blessing from God. Besides needing corrective lenses, a high caloric diet and vitamin B12 injections, Sammy is a happy, healthy and intelligent young gentleman; who understands an in-depth meeting of life, far beyond the most of us…. He tells me (his Mama), “he has been on the other side so many times he has come back with business cards.” To know Sammy is to love Sammy and I eagerly await by his side, to see what life has in store for this remarkable little Warrior.
There are so many other little boys and girls just like Sammy. While we cannot adopt all of the little "Sammy's in waiting", we have opened our home to heal and love as many as we can and help them move on to loving homes of their own; and so the birth of Angels in Waiting and our determination to affect as many lives as possible began, through the Hearts and Hands of Nurses.
Thanks for reading.
Linda West Conforti, RN
Autumn spent over 3 months in the Neonatal Intensive Care unit. Professionals diagnose her with institutional-like syndrome. Shortly after that diagnosis, Autumn developed a troubling syndrome that appear to be a form of narcoleptic-like episodes and failure to thrive issues. I prefer not to speak of her social situation that led her into the foster care system as a medically fragile little Angel, as I'm still in contact via Facebook with her large extended family. However, I would like to show how a dog named Toby spent countless hours with this little girl during her narcoleptic-like and postictal episodes. These episodes literally last for days and some times a week. The 2nd photo in the below gallery is showing an episode after her physical therapy appointment. Any negative stimuli: physical therapy, loud noise, emesis, injections etc., would cause Autumn to have narcoleptic-like occurrences. She would go into a narcoleptic-like coma and would not wake up! Autumn needed to be tube fed, frequent assessments and position changes. Our dog Toby would not leave her side when she was in these coma like states. He would gently lay his muzzle on her chest and stay their for hours, and gently lick her feet and her toes. One afternoon after Toby was performing his "toe licking therapy", I heard her giggle as I walked by... The below photos are of Autumn and Toby shortly after her giggle episode. She has not had another narcoleptic episode from this day on and has shown no signs or symptoms of her tragic past-thanks to a dedicated dog named Toby.
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 causes 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 and give her a shot every week to build up her red blood cells. Her gut is "leaky", so bacteria easily seeps 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.
She was so used to avoiding eye contact to protect herself that it delayed her ability to walk to 23 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 pack 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 several organ transplants in her near future. At least with me as her advocate, 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 her bedside during the difficult times. Please help Angels in Waiting, USA help these two special Angels.
- Update … See, miracles DO occur in the hands of nurses… Lexie’s update:
Lexie is now 12 years old and has a new horse! She has done remarkably well through the heart and the hands of Charla's care. Still on TPN 18 hours/day, but is not in need of any organ transplants! Many children on TPN have had organ transplants because of the toxicity of the TPN on the liver. Lexie's liver has been stable, and her kidneys (once troubled because of the multiple IV Antibiotics she's received) are back to baseline. Lexie is one of the lucky ones on TPN :-) ~ Charla