By Lisa Britton
For the Baker City Herald
Lindsey Bingham is pushing the limits of her situation, causing Lucile Packard Children's Hospital to revise their policies.
At least for her.
Lindsey, 8, is awaiting a heart transplant at the hospital in Palo Alto, Calif. She has dilated cardiomyopathy, which means her heart is enlarged and cannot properly do its job. A device called a Berlin Heart mechanically keeps her heart beating.
But that doesn't keep her confined to a room.
"She's so small, active and wiry," says her dad, Jason Bingham. "They're trying to figure out how to give her good quality of life. Most of the kids stay in their room. She likes to get around."
She's been in the hospital for seven months, and Thursday marks six months on the transplant list.
Doctors said to expect a three- to six-month wait for a heart.
"We're getting close," Jason said.
While they wait, the Binghams - parents Jason and Stacy and their five children, Sierra, Megan, Lindsey, Hunter and Gage - have moved from their home near Haines to California. They stay at the Ronald McDonald House, which is near the hospital and costs $10 per day.
Jason, a CPA, returns to Oregon when he can, but he is also able to work long-distance.
His work, though, is juggled with time at the hospital and the activities of the older children, who are attending school in California and are involved in sports and music.
But Lindsey can't leave the hospital to accompany her family - the Berlin Heart is guaranteed for only 30 minutes off battery.
"One hundred percent of the time we get a phone call from her," Jason said of when they are attending a basketball game or concert.
But Lindsey, as mentioned before, is pushing the limits of the patient-specific protocol.
They did a test to see how far she could walk in 15 minutes. (There and back would meet that 30-minute limit off battery power.)
"We walked clear to the other side (of the hospital) and it was only nine minutes," Jason said.
Now Lindsey is OK to walk to the Stanford Hospital (which is connected to Lucile Packard).
"They have more hallways and more things to look at. It's opening her world up a bit," Jason said. "You can only walk the same hallways so many times without going nuts."
She especially likes the Stanford gift shop.
"It has a lot of different gifts than the Lucile Packard one," Stacy said.
Physically, Lindsey is strong, which will be good for the transplant and recovery.
"She's exactly where they want her," Jason said.
She's gained 17 pounds, mostly due to the 1400 mL "feeds" she receives at night.
"She needs those reserves," Jason said.
And for now, they wait.
But just as Lindsey's condition is somewhat stable, the Binghams worry about their other children, who all have signs of heart trouble.
Gage, 4, has dilated cardiomyopathy, the same condition as Lindsey. He now has an internal pacemaker and is on medication. Sierra, 13, had the same disease, and she received a heart transplant in 2006.
Megan and Hunter have heart irregularities.
So far, genetic testing is inconclusive, and tests for environmental causes have come up negative.
All of which is frustrating for the parents.
"What can be causing this?" Jason said. "We tested (the water) with every test we could come up with."
Although they miss their home near Haines and the laid back life of Eastern Oregon, the Binghams say they have experienced many kindnesses in California.
"The California people are really taking care of us," Jason said.
A local attorney has offered him office space, and the church and school offer many activities for the kids.
"Things are really going well," Stacy said.
The kids are making friends at school and the community has been really supportive, she said.
Both Jason and Stacy emphasize how appreciative they are of all the support - fundraisers in Oregon and Logan, Utah, where Stacy grew up, as well as cards, prayers and comments on their blog.
They have no way of knowing about every donation made to the Lindsey Lou Heart Fund - and many come from strangers who are touched by the story.
"Through all this, the biggest thing I've learned is humility," Stacy said. "It's hard for us to accept help from other people - we've always taken care of ourselves. It's amazing how many giving people are out there - we know we're loved."
STATEMENT FROM THE BINGHAM FAMILY:
"As a very eventful and challenging year for our family draws to a close, we are happy and extremely thankful to report that Lindsey, Gage and Sierra are doing very well, as are each of us. We express our sincere thanks to each of you for helping and supporting all of us in so many ways as we continue to wait for the ultimate gift of life.
Your thoughts, prayers, contributions of time, service, money, uplifting and very humorous comments and all other acts of love and kindness have been, and continue to be, appreciated way beyond our ability to adequately express. With all our 'hearts,' thank you!!
Please accept our sincere appreciation for all that has been done in our behalf."
Love, The Bingham Clan - Jason, Stacy, Sierra, Megan, Lindsey, Hunter and Gage