Jazir Westerfield thrusts his arms into a 4-year-old-size fireman uniform, then tops his costume with a fire hat.
He appears ready to save the day, to conquer whatever natural disasters life throws his way, a superhero of small stature.
A few minutes earlier, Jazir played the part of a rock star, strumming mighty rifts on a blue Mickey Mouse guitar.
But, after play time, disharmony thundered. Reality clanged.
This little superhero star, surrounded in his living room by 20 cardboard boxes full of medical supplies, has to prep for a tedious treatment—peritoneal dialysis.
It plays out this way every evening in his family’s northeast Grand Rapids, Michigan, home. Most times the dialysis is administered by a visiting nurse. This evening, Jazir’s mom, Tammy, is in charge of the treatment for her 4-year-old magic man whose kidneys failed in utero.
Doctors removed one kidney when Jazir turned 2 years old and the second kidney this year.
“Dialysis flushes all the bad stuff out,” Tammy explained. “What our body releases by urine, Jazir’s body releases by machine.”
In the deep brown eyes of a 4-year-old, perhaps he views it like a fire hose that sprays away the toxins. He’s grown accustomed to waiting, patiently, for a suitable kidney so he can undergo the transplant he so desperately needs.
Waiting for the call
Born Jan. 28, 2011, Jazir spent the first four months of his life in the Spectrum Health Helen DeVos Children’s Hospital neonatal intensive care unit.
Dr. Yi Cai, MD, PhD, Jazir’s pediatric nephrologist with the children’s hospital, said he struggled with posterior urethral valve disorder, a membrane obstruction in his urethra that affects about 1 in 8,000 babies. Because he couldn’t urinate while growing in his mother’s uterus, his kidneys were severely damaged. The connection to his mother kept him alive.
“Out of the womb, we didn’t think he would survive,” Tammy said.
Yet he did.
In subsequent years, like bedtime fairy tales and goodnight hugs and kisses, dialysis has become part of Jazir’s evening routine. Blood pressure, thyroid, iron, vitamin D and bladder medication are mixed with a cup of milk each night.
As Tammy mixed meds, Jazir wanted to mix more music.
“Where’s my ‘tar,” he asks. “You know where my ‘tar is, Mommy?”
Tammy smiles as Jazir located the Mickey guitar and plucked at the strings.
“It takes me 30 minutes to get everything together,” Tammy said. “This is the time I let him wear himself out.”
It’s also the time the fire jacket comes off. Because the blood pressure cuff goes on: 121/82.
Tammy slips a thermometer beneath Jazir’s right armpit as both sit Indian-style on the living room floor.
“A lot of this he can do on his own,” she explained. “He knows the routine.”
Tammy and Jazir proceed to the little boy’s bedroom, decorated in Cars and other boyish motif.
She washes Jazir from head to toe, then checks his weight: 35 pounds. She wears a mask and gloves. He wears a Disney-themed mask.
It’s time for all superheros to be sterile.
“We can’t have any windows open, no fans, nothing of that nature,” Tammy said. “Everything has to stay as sterile as possible.”
She connects the dialysis machine hose to her little boy’s g-tube in his belly, then hits “go.”
The machine will pump dialysis fluid into her son’s body that will flush out toxins.
On this night, she will sleep in the reclining chair in her son’s room, or on the floor. She has to be there every moment, in case of a malfunction.
“I want to hear the machine, if it turned off or didn’t drain enough,” she said.
Jazir typically sleeps through the 10-hour treatment.
The machine does the work of kidneys, and enlarges his belly in the process, so that there will be room for an adult kidney, once one becomes available for transplant.
Dr. Cai said typical wait times for donor kidneys are three to nine months.
“Hopefully he will get an organ offer very soon to finish his transplant,” he said.
Upcoming challenges, once he receives the gift of life, include his young age, low weight and continuing post-transplant medical treatment, Dr. Cai shared.
Tammy thought they had a donor lined up, a family friend who plays in the National Football League. She learned recently it wouldn’t work out.
“Jazir is on the transplant list,” Tammy said. “A call could come at any moment.”
And in this cozy first-floor apartment, a little fireman waits for the call that will change his world.