Written by Patty Decker Tuesday, 20 November 2012 15:48
Thanksgiving means different things to different families. But for Pete and Krista Richert of Hillsboro, seeing their daughter enjoy the holiday like most other children this year is reason for gratitude and celebration.
Their daughter, Lindsey, now 6, has been in kidney failure since she was 6 weeks old. About a year ago, her condition worsened.
“Lindsey’s kidney doctor said her labs were getting progressively worse, and last year around Christmastime is when her doctor said we needed to step up with dialysis or decide not to do treatment,” Krista said.
“But no treatment was not an option.”
Four surgeries later, their daughter is stable, for now, and looking forward to a traditional holiday with family.
“We have family coming here and we are going to see family,” Krista said. “(Pete and I) are so thankful that Lindsey can maybe have a normal Thanksgiving and Christmas with nothing in her stomach and not having to see any doctors.
“We are so ready for a normal time and are very grateful (this remission) came now. We were all so stressed and at our limit, but are ready to enjoy holidays, enjoy family and friends, and hopefully after the new year then take it day-by-day.”
How it began
Lindsey weighed 5 pounds, 6 ounces, and was 20 inches long when she was born.
“She looked fine and cleared all the tests at the hospital,” Krista said. “But then she didn’t gain weight, started losing weight, would eat for a minute and was never satisfied and she cried a lot.”
Krista said she knew something was wrong.
A visit with the physician, plus a urine test, confirmed Lindsey had bad kidneys.
Not long after that, Lindsey received further testing at Children’s Mercy Hospital in Kansas City.
“At 6 months old, Lindsey was taking vitamins and supplements,” Krista said. That seemed to help until Lindsey was about 51?2.
The first step was to put in a peritoneal catheter, which Krista described as a long tube going into her child’s stomach.
“The doctors had to make a tunnel for the catheter,” she said, “(The catheter) sits in her stomach cavity and on the outside has locking mechanisms to open and close it,” she said.
Krista and Pete were expected to hook dialysis fluid to the catheter and fill the stomach cavity, transferring good and bad to balance it out. The catheter would suck out the toxins in their daughter’s stomach.
Krista said that while Lindsey was healing from the surgery, they were giving her antibiotics.
Before the catheter was completely out, Lindsey’s left kidney was removed Oct. 15.
“We were told that taking the left kidney was the best decision we could have made because it slowed down the output of nutrients so her body could actually absorb them,” she said.
The next step was dialysis, but complications occurred.
“When we actually did start dialysis, (the catheter) didn’t work right,” she said.
Lindsey would need to have laparoscopic surgery to fix the problem. The Nov. 2 procedure moved the end of the catheter from Lindsey’s left side to her right side, Krista said.
Following the procedure, the catheter still wasn’t working. After more evaluation, the doctors determined it was a bad catheter because of the way it was laying inside.
“There was no way to know it was going to happen,” Krista said. “It’s rare when it doesn’t work, but it can happen.”
Lindsey’s third surgery in less than a month was Nov. 9 to remove the catheter.
Krista said their daughter is doing well.
“Now that the catheter is out, Lindsey is actually in the best condition she has been in her entire life,” she said. “If her labs continue to be this good, her doctor is happy with supplements and doing blood work once a week to make sure it stays good.”
For Pete and Krista, though, it’s still a concern as to how long the test results will remain at desired levels.
“It is a gamble.” Krista said. “We are not sure if it will stay this good a month, a year, or just how long her kidney holds up.”
Lindsey’s kidney is functioning at 15 percent, Krista said, and most of it is scar tissue.
“We hope to start growth hormones next month,” she said.
“Her kidney will never get better, and the only thing we can do is manage her blood level, one week at a time,” Krista said.
Lindsay doesn’t take any medications, except shots, Krista said.
“It’s all just supplements, like vitamins, to help her blood take out stuff from what she eats and absorb it.”
The prognosis, she said, is complete kidney failure, Krista said.
Once that happens, the next step would be a kidney transplant. But there are many criteria Lindsay has to meet before being put on a transplant list.
“Pete and I have talked about it, but won’t test until Lindsey is ready for transplant,” Krista said.
Krista and Lindsey have the same blood type, and Krista could be a potential match. But Pete cannot donate because he has had blood transfusions and was injured will serving overseas.
In the event Krista isn’t a match, the next step would be to have family members volunteer to be tested, and after that, friends.
“If we can’t find anyone (from that group), then that is when Lindsey would be put on the list.”
Krista said their daughter continues to be in “good spirits.”
“Pete and I have had a harder time accepting it than she has,” she said. “How do you explain to a 6-year-old what is happening?”
One time while she and Pete were trying to get the dialysis to work, and before they knew there was a problem, she asked Lindsey: “Are you ever mad at God about this?”
Lindsey’s response: “No. He made me this way for a reason and we just don’t know what that is yet.”
Although Lindsey is still underweight, Krista said she is pleased with her size.
The couple have one other child, Riley, 4, who is about 4 inches taller than her sister.
“Lindsey weighs about 30 pounds and is very tiny,” Krista said. “If people saw them together, they would just think Lindsey is a lot younger than Riley.”
At one time, Krista said, Lindsey was at 2 percent on the growth scale. But now she’s not even on it.
Thankful for support
The Richerts are grateful for everyone who has been supportive.
“People from my church, work and the community have sent Lindsey cards and she loves them,” she said.
A first grader at Hillsboro Elementary School, Lindsey enjoys reading her cards and Krista encourages anyone to write her.
Their address is 503 W. Grand, Hillsboro, KS 67063.