Avery Saulino was two days old when he had an operation for a vesicostomy. Seven months later, surgeons placed a gastrostomy feeding tube into his tummy. Last August, his right, non-functioning kidney was removed. And this fall, he returns to the hospital to close the vesicostomy gap.
Four operations — as well as a hefty dose of injections, supplements, formulas and fluids — has been what's needed to keep the two-year-old Coquitlam boy alive.
And his parents, Mike and Carmella Saulino, plus a team of nephrologists and urologists at BC Children's Hospital, have been watching him like a hawk, monitoring his every move and change in his body.
A mom and dad to five kids under the age of nine, the Saulinos have been on a roller coaster ride since before Avery was born.
They learned he was sick while still in her belly. He had a urinary blockage, which is common for boys, Carmella said, but his infection developed into kidney disease.
At 37 weeks, she was induced at Royal Columbian Hospital in New Westminster and he was soon transferred to the neonatal unit at BC Women's Hospital in Vancouver. The first surgery came two days later and, for the next five weeks, he recuperated in intensive care.
"We had a lot of learning to do in that first year," Carmella recalled. "We were back and forth to the hospital and running around everywhere."
The emergency trips and juggling of family life took a toll on their family. One of their daughters suffered anxiety because of all the shuffling around when relatives, friends or neighbours were called at the last minute to help out with daycare.
Their home life also changed dramatically.
Avery was placed on a strict low-potassium diet. Every day, he has to drink two litres of fluid, be hooked into a feeding pump overnight to boost his fluid intake and ingest a special formula plus iron supplements and protein pills.
At night, Avery is also required to have a growth-hormone shot.
Last summer, doctors took out his right kidney. "The doctor told us it was like cement, the worst he had ever seen," Mike said.
Now, the illness has resulted in Avery's remaining kidney functioning at 70%.
Still, despite the medical challenges, the couple say they're grateful to the Kidney Foundation of Canada for providing with the life-saving treatment and support for Avery.
On Sunday, they'll be taking part in the Kidney Walk in Coquitlam, an event sponsored in part by The Tri-City News, to build awareness around — and funds for — the charity.
The Saulino family will walk under the "Team Avery" banner with the goal to collect $500. "We want to do our part," Carmella said. "It's so important what the foundation provides to families like ours."
• The Kidney Walk is a 2.5-kilometre loop around Lafarge Lake in Coquitlam Town Centre Park (off Pinetree Way). It takes place Sunday, Sept. 25 at 10 a.m. To donate to Team Avery, visit kidney.ca/bc-home.