SAN FRANCISCO -- His high-pitched cries of "Owie!" leave no doubt that Matthew Ouimet is in pain. But where? The angry purple incision from his double transplant surgery two weeks ago? His tongue, which he bit so hard during a recent procedure that it had to be surgically stitched? His hands and feet, bruised from IV needles? It's difficult to tell.
Matthew, the 2-year-old son of Kelly and Kristi Ouimet, of Antioch, has come a long way the past few weeks. He was born with primary hyperoxaluria Type 1, a rare genetic condition that left him in need of a kidney and liver transplant. After a 15-month wait on the transplant list, he received his organs during a 13-hour operation that ended the morning of June 5. He survived a rocky first week in the ICU, during which his transplanted organs did not fully function and he had internal bleeding that caused him to vomit blood. However, a planned follow-up surgery a week later went well. Less than two days after that, he was moved out of ICU.
Since that milestone, it has become clear he still has a long way to go. Children make up a small fraction of transplant recipients. According to the Organ Procurement and Transplantation Network, only 7.4 percent of all transplants performed in the U.S. since Jan. 1, 1988, involved patients 18 years old or younger. In Matthew's case, both organs had to come from the same donor to reduce the risk of rejection. Three other times the Ouimets were told that organs were available for Matthew, only to have their hopes dashed when it wasn't a good enough match.
"It's a rough road," Kristi Ouimet said Wednesday from her son's room at UCSF Benioff Children's Hospital. "Like they keep telling us, it's a marathon."
Added Kelly Ouimet, "It's a marathon with hurdles."
The good news: Though his transplanted kidney is functioning at a low level, doctors reassure the Ouimets that such so-called "sleepy" kidneys are not unusual. There has been bleeding around the new liver; doctors say that also is not unexpected. Best of all, there is no sign of rejection.
"They don't seem to be too upset," Kristi Ouimet said, referring to Matthew's doctors. "They said, 'Don't be surprised if (the kidney) takes weeks.' It's not rejection. That's what they care about."
What the Ouimets weren't prepared for were the ancillary issues -- the tongue, the transplant incision that keeps popping open, Matthew's vomiting, his restlessness, his pain, their inability at times to comfort him.
"It's been one thing after another on top of the transplant," Kristi Ouimet said. "There is no normal. I love my baby. I don't recognize this behavior."
But she understands it.
"He's a 2-year-old on steroids," she said. "And he hurts."
The Ouimets, if occasionally disconcerted, are not discouraged. On Wednesday afternoon, they responded to every mini-crisis with quiet patience.
"With my law enforcement background," said Kristi Ouimet, who went through the Antioch Police Department's explorer program and worked for the Lodi Police Department, "I can do what needs to be done. But when he says, 'Mommy, save me,' there goes that facade."
Both parents rave about the support they're receiving from the UCSF staff and the community. Matthew, Kristi Ouimet said, has teams of doctors with various specialties: gastrointestinal; ear, nose and throat; pain; kidney; and liver.
The hospital's child life department provides activities for Matthew's older siblings, Patrick, 8, and Molly, 10, when they come to visit. Workers in the hospital cafeteria ask Kristi, "How's my baby doing today?"
Meanwhile, people who have read or heard about Matthew's case have mailed cards and packages of stickers, books and hand-drawn pictures to the hospital. Matthew also has received two little superhero capes -- one Superman style (with an M instead of an S) and one with a Mickey Mouse print.
While appreciative, the Ouimets are quick to remind that they have a bigger message to share. From Matthew's hospital room they are teaming with the American Red Cross to organize a blood drive July 11 at St. Ignatius Church in Antioch, at which people can also register to be an organ donor and place themselves on a bone marrow registry.
"We're not doing this for us," Kelly Ouimet said, noting that blood donations will go to others in need, not Matthew.. "We're doing this so people will do for each other."
Contact Gary Peterson at 925-952-5053. Follow him at Twitter.com/garyscribe.
1-7 p.m. July 11
St. Ignatius of Antioch Church, 3351 Contra Loma Blvd.
In addition to donating blood, people can register to be an organ donor and, with a mouth swab, have themselves placed on a bone marrow registry. For more information or to schedule an appointment to donate blood at the drive, call 800-RED-CROSS or go to www.redcrossblood.org and enter sponsor code MATTHEWOUIMET.
To help Matthew Ouimet
Go to www.cotaformatthewo.com and click on "Donation Options" or "Donate"; or go to www.mightyts.com and click on the Matthew Ouimet link. Donations and proceeds from T-shirt sales will go to the Children's Organ Transplant Association to help Matthew and others like him.