After 42 days of living the relatively “normal" life of a pediatric heart patient in a Palo Alto, Calif., hospital, 8-year-old Lindsey Bingham returned to the intensive care unit Thursday as doctors tried to control her irregular heartbeat.
Lindsey's father, Jason Bingham, said doctors are hopeful medications will get the arrhythmia under control, and she could be out of the ICU within a few days. Then, she can return to attending the in-hospital school while she awaits the heart transplant that could save her life.
Lindsey has been at Lucile Packard Children's Hospital since June 12. She's on the waiting list for a heart transplant. Until one becomes available, her own failing heart beats with the assistance of a device called a Berlin Heart.
The return to the ICU was devastating to Lindsey, said Jason Bingham.
“She bawled and bawled and bawled," he said Friday. “She's been trying so hard in (physical) therapy, and Stacy (her mother) had to tell her this wasn't her fault."
Lindsey has dilated cardiomyopathy, the same condition that resulted in her older sister, Sierra, receiving a heart transplant six years ago.
“June 12 was her last time outside," Stacy Bingham said during a phone interview from California. “When we go for walks, we find a sunny window. The more she can be out of her room, the better she does."
To keep the family together, the Binghams have enrolled their three other school-age children in Palo Alto, where classes started in mid-August.
Sierra is in seventh grade, Megan is in sixth and Hunter, 5, is in kindergarten. Gage, 3, is not in school yet.
“It's been a little crazy, and a little culture shock," said Stacy Bingham.
But the biggest change is for Lindsey, who is in third grade at Lucile Packard, where teachers consult with each patient's regular teacher back home so they keep on track with their studies.
Jason, an accountant in Baker City, returns home every two or three weeks to catch up. Stacy, a registered nurse, is in the process of obtaining her California nursing license. Her idea, if life allows, is to work one night a week or even just one day a month to keep her license active.
This California life is all temporary — they're just waiting for Lindsey to get a heart. The family lives at the Ronald McDonald House in Palo Alto.
After a transplant, it's about three months before the patient can return home.
As they wait for the new heart, Lindsey must stay healthy to keep her priority position on the transplant list. When she was out of the ICU, she filled her time with school, physical therapy, walks, the playroom and eating “a little bit."
“No fevers or tummyaches," Jason said.
Heart issues have been discovered with all five Bingham children, and results from genetic testing should be back later this month.
Stacy said there's only a 40 percent chance a gene will be found that is responsible for the heart conditions.
Gage now has a pacemaker to keep his heart in the right rhythm.
“He still sees the heart failure team," Stacy said, referring to a group of heart specialists. “(A pacemaker) doesn't reverse the disease; it just slows it."
In other words, chances are the Binghams will be faced with this wait for a new heart again, with another child.
And Sierra still must have annual biopsies to test for rejection of her heart. This year's happened Wednesday, and doctors determined she has a 1B rejection — “meaning on a scale of 0-4 with 4 being the worst, Sierra has a 1B," Jason said. “She has been a zero for about a year, so this was a surprise to everyone."
He said her rejection medications will be increased, and she will have another test next month.
The news of Sierra's biopsy and Lindsey's return to the ICU came to the Binghams at the same time Thursday, Jason said, just as he was on his way home to Eastern Oregon.
“It was a hard day," he said.
Doctors have put Lindsey on medication to try to control her irregular heartbeat. If that fails, they will try more aggressive medication, Jason said. If the medications fail, she may need to have a second Berlin Heart installed to pump blood for the right ventricle of her failing heart; her current Berlin Heart pumps blood only for the left ventricle.
Jason described the second Berlin as a “last resort" and something the family doesn't want to think about.
“But we've been down this road before, and I have to think about it — I have to be prepared for the possibilities," he said.