“It’s very frustrating,” Ember’s mother, Joanie Carey, said of the heart defect and domino-effect of complications that messed with her daughter’s health.
Ember is listed in stable but critical condition at Mayo Clinic Hospital Saint Marys Campus, where she’s on her 80th day hooked up to a machine giving oxygen to her blood and pumping blood to her organs.
“She’s about as stable as we could hope for,” said Dr. Jonathan Johnson, medical director of the pediatric heart transplant team at Mayo Clinic Children’s Center. “She’s awake, not on a ventilator.”
Ember was diagnosed with a heart defect known as noncompaction cardiomyopathy in late spring 2014. Two weeks later, she went into cardiac arrest, had a stroke and was put on life support. She had months’ worth of improvement after that, but her condition worsened again. On July 16, Ember had a heart transplant at University of Minnesota Masonic Children’s Hospital in Minneapolis; a rare complication rendered the donated heart useless. She was transferred to Mayo in early August.
Her kidneys began shutting down from being on life support for so long. Because they haven’t bounced back, she was also listed for a kidney transplant.
A new heart and new kidney for Ember could come from the same donor, but Johnson said they will take whatever they can get.
“If we had an offer for a heart (only), we’d do it,” he said. “But say we had a call tonight, we’ll give you a heart and kidney together, we’d say ‘yes.’ ”
Johnson said about 400 heart transplants are done nationwide each year on children ages 18 and younger. The pediatric heart transplant team at Mayo usually performs between five and eight such transplants annually and has done six so far this year.
The fact that Ember needs both a heart and kidney makes hers a high-risk case, though her liver and lungs are working great, Johnson said.
“We’re very optimistic, but even if everything goes well, it’s going to be a long road to recovery.”
Carey was recently able to hold her daughter in her arms for the first time since the July transplant.
“She kept trying to get as close as she could to me,” she said.
Carey said as Ember has been weaned from medications over the past few weeks, she’s become more awake, aware and frustrated.
“She hasn’t smiled since, not once,” Carey said.
Her parents occasionally see hints of attitude while trying to keep their toddler entertained for days on end in a hospital room.
“If her movie is not on, she’s mad,” said Carey, referring to Ember’s favorites that include the Disney animated movies “Frozen” and “Tangled.”
The Careys will celebrate Ember’s second birthday at Mayo this weekend, a few days early. After the party, Joanie’s husband, Nathan, will remain in Rochester with Ember, staying at the nearby Ronald McDonald House, while Joanie and their son Willie head back to Casselton.
The long drive from Casselton to Rochester has been tough on Joanie and Nathan. The drive is farther than the trip to Minneapolis when Ember was hospitalized there.
There have been other adjustments, including smaller rooms at Mayo, where Joanie and Nathan are not allowed to sleep in the room with Ember like they could in Minneapolis. And with fewer trips to see Ember, Willie has become very lonesome for his little sister and daddy, Carey said.
She said she believes Ember’s fate is in God’s hands, and she relies on her faith and a heavy dose of patience to cope.
“Take it one day at a time, that’s all we can do,” Carey said.