It's a game they know well. Julius Heilman leans forward near where 21-month-old Matthew Ouimet is seated, a ballpoint pen conspicuously tucked in the breast pocket of his lab coat. In a ritual honed over months, Matthew impishly "steals" the pen. It's difficult to tell which of the two enjoys the game more.
In that moment, Matthew is the epitome of a bright-eyed, adorable toddler -- by turns busy, curious, fun-loving, restless. He swipes at an iPad's screen like a lifelong techie. He performs the seated dance his family has dubbed the "wiggle butt." He uses the pen to draw squiggly lines on his bedsheets.
"He's as normal as can be," said his father, Kelly Ouimet. "Until you pull his shirt off."
Two dialysis catheters protrude from Matthew's chest. He has a feeding tube implanted in the left side of his torso. A peritoneal catheter snakes along the right side of his abdomen and into his stomach, just above the navel.
Matthew was born with primary hyperoxaluria Type I, a condition that leaves his liver unable to remove oxalates from his blood. Over time, excess oxalates accumulate in other parts of the body, forming crystals and clogging small blood vessels. Kidney issues are often the first warning sign. Matthew was 4 months old when he experienced renal failure. He undergoes four-hour dialysis treatments six days a week at UCSF Medical Center, where Heilman is the patient care manager of the pediatric dialysis unit.
"They've told us, 'It's going to happen any day now. It's not going to be long,'" Kelly Ouimet said. "Well, it's turned into long."
Sharing their saga
The story of Matthew's young life is at once heartwarming and heart-rending. His parents, Kelly and Kristi Ouimet, want to share it for one reason: to raise awareness for organ donation, especially children's organs.
Matthew will need organs from a teenager or small young adult, because kidneys do not grow once they have been transplanted. "Most people don't realize that little people need little organs," Kristi Ouimet said. "The difficult part is trying to bring up the subject, to say, 'Imagine if some tragedy struck your child.' God forbid that happen to anybody. But it has to be said: 'Would you, if it was possible, be willing to donate your child's organs to save other children?'"
Nationally there are far more adults than children awaiting organs, and the shortage of donors hampers patients no matter their age. But the scarcity of suitably sized organs for pediatric patients
As a result, pediatric livers are first allocated to children, as are kidneys from donors younger than 35 years old. The organs are distributed to adult patients if there is no suitable pediatric patient, Dick said.
"Size is a significant restriction for children. They tend to wait quite a bit longer," Dick said. "Kids of a certain age -- 18 months to 2 years -- will get priority if a donor becomes available because it's harder to find donors in that age group."
There may be no
It began the day Kelly Ouimet, an Antioch police officer, pulled over Kristi, then a high school senior, for driving too fast.
"She was speeding," said Kelly, 46. "I stopped her, and apparently I gave her a bit of a tongue-lashing."
"He was mean," recalled Kristi, 38, smiling. "He gave me a warning. As he was walking back to his motorcycle, I looked in the mirror and said to my friend, 'He's cute.'"
Over the years, as Kristi began a career in law enforcement, their paths began to cross. They were married Feb. 21, 2002. They learned they were carriers for primary hyperoxaluria when their first child, daughter Molly, now 9, was diagnosed with the condition, which is estimated to affect between 1 in 100,000 and 1 in 1 million people.
"I've been working at UCSF for seven years and Matthew is the third patient we've had with that condition," Heilman said. "It's not common at all."
In Molly's case, its effects have been relatively moderate. She develops kidney stones, some of which have had to be removed surgically. She is active, playing soccer on a youth league team. But she knows she will one day need a kidney transplant. The Ouimets' second child, Patrick, 7, does not have the condition.
Matthew was diagnosed in the womb.
"We expected it to present as it did with Molly," Kelly said. "But it didn't."
Instead, the Ouimets found themselves in the emergency room at Kaiser Permanente Deer Valley in Antioch on a summer night 16 months ago.
"We make a call to our family priest," Kelly said, "and he comes by to baptize Matthew, because we don't think we're going to make it."
Matthew was transferred to UCSF Medical Center. The hospital sent an ambulance and two specialists to Antioch to pick him up.
"When we first got there, they're telling me his sodium was too low and they were surprised he hadn't gone into seizure," Kristi said. "Then they're telling me his creatinine is through the roof. And oh yeah, how long has he had this heart murmur? I'm like, 'Oh my god, what else are you going to throw at me?'"
It took five days to stabilize Matthew before he could undergo dialysis. His eyes swelled shut. He was listless. Initially they put the dialysis catheters in his carotid artery. Once dialysis began, Kristi said, "you could see him coming back."
Eventually the Ouimets fell into their new normal: making the 48-mile drive to UCSF Medical Center, arriving about 6 a.m.; trying to keep Matthew engaged and happy as he's prepped and undergoes treatment; and then returning home.
Over time, the Ouimets and the staff at UCSF have come to regard one another as extended family. Heilman has come to know Matthew's moods, and how the pen-in-the-pocket game can serve as a useful distraction.
"They do become family," Kristi said. "You can't help but have that happen."
"They should just give us a key," Kelly said.
The waiting can be wearing. The Ouimets try to look on the bright side.
"The thing they mentioned was, Matthew is healthy enough to wait for a perfect organ," Kristi said.
Twice they were told organs had been found, once in August and once less than a week before Thanksgiving. Both times they rushed to the hospital only to be told the next day that the organs weren't a good enough match. Matthew remains on the list.
"The waiting list for a liver is based on how ill you are," said Dr. Paul Brakeman, attending pediatric nephrologist at UCSF. "The more ill you are, the more points you get, the more likely you are to get an organ. Matthew's lab tests look good because he has a functioning liver. He just doesn't have the gene that removes the oxalates from his system."
Matthew's care and treatment send ripples to every corner of his family. Kristi, who retired on disability at 28, has been diagnosed with carpal tunnel and rheumatoid arthritis. She can't treat the former because she doesn't have time, and won't take medication for the latter because Matthew is still nursing.
Before her day is done, she gives Matthew a peritoneal dialysis at home. Wearing a mask and taking care not to contaminate connectors on the catheters, she flushes 600 milliliters of dialysis solution through his tiny body, allowing it to sit in his peritoneal cavity for two hours. This helps expand his abdomen so it will accommodate the transplants. She carefully weighs the solution before and after the procedure to make sure that everything that goes in, comes out. If she's lucky, she gets to bed by 11. She's up again at 3:30 a.m. to prepare medication and formula for the coming day.
"I have my emotional days from time to time," she said. "It's still an ongoing journey and it is exhausting. But I have complete faith we will get there."
Because Matthew sleeps with Kristi, so she can make sure his catheters are secure and so she can nurse if needed, Kelly, who works the graveyard shift, has been relegated to Matthew's room. He lavishes praise on his wife for the way she cares for their young son. He jokes that "work is where I go to relax."
Molly and Patrick have moved in with Kristi's parents, just a few miles from the Ouimets. They spend Saturday nights, and some Friday nights, at home with their mom, dad and baby brother. They also come home for a few hours after school each weekday. One recent after-school visit began with Molly informing Kristi she had been called to the principal's office.
"How did it go?" Kristi asked.
"There were tears," Molly replied matter-of-factly.
Patrick forgot his lunchbox at school, but remembered an invitation to a birthday party. Kristi made a point of noting the date on her phone. "We missed the last one," she said.
Homework segues to video games in the living room and the happy tumult of a family in full.
Matthew's medical bills are paid by insurance. But insurance doesn't pay for the commute to and from UCSF. The Ouimets bought a car in August 2011; it already has logged 47,000 miles and has gone through a set of tires. A local vendor sold the Ouimets a new set of tires at dealer cost.
It's only one example of the support Kristi and Kelly have received from friends, colleagues and, in some cases, strangers. Restaurants have held giveback events. The Antioch Police Officers Association, Delta Advocacy Foundation, California Department of Corrections and the charitable foundation Danielle's Gift have all, in Kristi's words, "been big supporters."
Beyond that, "we've had dozens and dozens of people wanting to be tested to be his donor," Kristi said. She has to decline the offers, because doctors want Matthew's new organs to come from the same person, and they won't take both from a living donor.
Sometimes the support is more ethereal. Like the time Kristi was approached by a woman who recognized Matthew from the night he was whisked off to UCSF.
"'We were there,'" the woman told Kristi. "We've been praying for him every night."
"He brings people together," Kristi said. "He has no idea what he's doing. But we do."
As another long day draws to a close at the Ouimets' home, a piece of inspirational wall art, hanging in their living room, seems achingly apt. It reads:
"One hundred years from now it will not matter what kind of house I lived in, how much was in my bank account or what my clothes looked like. But the world may be a little better because I was important in the life of a child."
Contact Gary Peterson at 925-952-5053. Follow him at Twitter.com/garyscribe.
3:30 a.m.: Kristi Ouimet rises to prepare medication and formula for the coming day.
5 a.m.: Kristi and 21-month-old Matthew start their 48-mile drive to the UCSF Medical Center.
6 a.m.: Matthew is prepped for his four-hour dialysis treatment, during which time the family and hospital do their best to keep Matthew engaged and happy.
11:30 a.m.: Kristi and Matthew begin the 48-mile drive back home to Antioch, arriving around 1 p.m.
7:30-8 p.m.: Prepare for bed
9 p.m.: Kristi hooks up Matthew for peritoneal dialysis treatment at home. She flushes 600 milliliters of dialysis solution through his tiny body, allowing it to sit in his peritoneal cavity for two hours to help expand his abdomen so it will accommodate the transplants.
Between 11 p.m. and midnight: Dialysis unhooked, Kristi finally goes to bed.