SALT LAKE CITY — Lily Winchester, barely 3, and Nathan Empie, 8, were busy with their childhoods a few dozen miles apart in different Utah towns just weeks ago. He was studying and making Lego creations and hanging out with his siblings, while she was hunting Easter eggs and tickling her baby brother, Henry.
Today, they're a floor and a couple of medical specialties apart at Primary Children's Medical Center, where he is building strength after a bone marrow transplant to combat life-threatening anemia and she's struggling to learn to swallow food safely and make her arms and legs cooperate after her nerves were attacked by Guillain-Barre. That's a disorder in which the immune system attacks part of the peripheral nervous system.
They have not met each other, but they have a lot in common, including the fact that both were brought to Primary Children's in dire medical need. When Lily was admitted May 10, she was so weak she could not sit up, say her mom and dad, John and Lori Winchester of Draper. Her symptoms appeared at first to be digestive, but the weakness that developed in her hips, her legs, her arms, her throat, soon spoke of something different and more ominous.
Nathan, the son of Jared and Brenda Empie of South Ogden, developed little bruises and red spots that at first seemed odd but not alarming. When he got a massive bruise in his ear, his mom was worried. The question of how worried she should be was settled when he came out of his bedroom one night, soaked in his own blood from a nosebleed that no amount of pinching and positioning would stanch. He looked like the victim of a serious crime, his mom said.
The two children are part of the children's hospital's bustling around-the-clock community. It's almost impossible to count how many individual children and families are treated at the hospital in a given year, says spokeswoman Bonnie Midget, because the stats aren't kept that way. But the numbers that are kept are impressive despite any overlap. Last year there were 13,600 admissions, 40,250 emergency room visits, 163,782 outpatient registrations. They did 716,479 lab tests, 5,274 inpatient surgeries, 12,670 outpatient surgeries. They also took 93,683 images.
Hospital staffers are proud of the fact that no child in need is turned away due to a family's inability to pay. A foundation actively raises money through activities like the annual Festival of Trees and the Children's Miracle Network Telethon. The latter will be broadcast on KSL from June 4 at 6:30 p.m. until 5 p.m. June 5. Because it's in conjunction with a national telethon, 45 minutes of each hour is local, 15 national. And to drive home the fact that money donated stays local, local donors and families that have been served by Primary Children's will be heavily featured.
Besides treating patients who are insured, last year the hospital expended more than $13.5 million to cover 13,587 hospital visits by needy children.
Who receives financial aid and who doesn't is not something that the healthcare providers generall concern themselves with or even know, Midget said.
Lily, a little girl described by her folks as "strong-willed, energetic and active," is just starting to bounce back. In rehab, physical therapist Lisa Barnes helps her stand up to bat a pink ball with a large plastic bat, then sends her to retrieve it. Lily thinks they're playing, but she's actually working on coordination and strength and stretching muscles.
Nathan, a funny soul who invites visitors to sign his calendar with a prediction on when he'll get out and who likes to tell jokes — "How much does a pirate pay for an earring? A buck an ear!" — knows that he's being distracted by projects like the elaborate and odd-looking construction-paper airplane he's taped together. But he's been in the hospital now for a couple of weeks and he is by nature pleasant, so he's game. Besides, the plane flies quite well.
Before they had to kill his immune system for the bone marrow transplant and restrictions on germs became rigid, his meals used to come with little cards that contained jokes. He'd memorize them and throw the cards away. Among his caretakers are people like Dan, the tech, who drew an elaborate ship on the window to his isolated room. One of his nurses drew a ninja on his whiteboard. That's also where his mom posted a Bible verse to encourage him.
Lily's having fun today, smiling and waving as she gingerly pedals a three-wheeler around the rehab room, showing off a bit for the aunts and grandma who stopped by to cheer her on. She has lots of relatives locally, unlike the Empies, who are Air Force transplants. But soon, Lily's tired and the tube that runs down her nose into her stomach was jostled and she starts to cry, because healing is hard work, too. It's a mixture of turns at bat and procedures like the spinal tap that led to her diagnosis.
The hospital is a busy place on this midweek day and Angela Winters has found a quiet spot off the main corridor to sit with her daughter, Olivia, 2-1/2, who has been in the hospital for most of the month. Her autoimmune system doesn't work right and she has been very ill. The blonde-haired tyke is hooked up to multiple monitors and as one goes off, her mom silences it like an old pro. Olivia is completely dwarfed by equipment, but oblivious as she tackles a small bag of Swedish Fish.
You can tell the parents who have been here with kids for a while: They've learned the lingo of their child's diagnosis and they speak that Medicalese casually. They are also less cowed by all the machinery. If a buzzer is annoying, they shut it off.
The emergency room seems to be having a little lull, but Dr. Stephanie Spanos is busy, moving from room to room to examine her small patients.
Many of the parents, like Amy House, are flat-out worried. Her baby, Wyatt, was having some trouble breathing and was hospitalized in Rock Springs, Wyo., with a form of respiratory syncytial virus (RSV). He went home from that hospital on oxygen, but he's been wheezing a little and his breathing seems kind of shallow and his mom and grandpa, Olen House, decided they'd better get him to a children's hospital. They have waited patiently to have him examined, while he sits on his mom's lap and plays with her fingers.
Wyatt will not be staying overnight. Spanos finds he has an ear infection developing and talks to his mom about the medicine he needs. But unlike the other three, he'll be in his own crib by nightfall.
EMAIL: lois@desnews.com
The Primary Children's Miracle Network Telethon will be broadcast from 6:30 p.m. June 4 to 5 p.m. June 5. All of the money raised helps children in need at the hospital.