MINNEAPOLIS — Five-year-old Temi Adebisi's room for the past 365 days is packed with so many toys, stuffed animals, balloons, artwork (and sparkles) that it can be easy to forget that it actually exists within hospital room.
That's the hope at least.
After feeling very sick at this time last year, Temi's parents took her to the Children's Minnesota Emergency Room. She still hasn't left the hospital.
"The medical word we use is dilated cardiomyopathy," said Dr. Adam Putschoegl, a transplant cardiologist at Children's Minnesota. "That's really just a big heart that's not squeezing well."
In addition to needing a transplant, Dr. Putschoegl says Temi's heart was so sick when she came in last year, that it wasn't responding to medicine. It soon became clear that she wouldn't be able to simply wait for a new heart.
"They did not know if she was going to make it the next 48 hours," said Temi's mom, Toyin Adebisi. "That was the worst day of my life. I do not pray for that day for my enemy."
With few options available, doctors recommended a temporary solution. Temi underwent surgery to connect her heart to a Left Ventricular Assist Device.
"It's basically an artificial pump that sits outside of her body to help to support her heart," said Dr. Putschoegl. "If she didn't have the device she probably wouldn't survive."
Temi's parents say her health quickly improved after the surgery, but over the next few months, the reality of being tethered to a machine that can only be unplugged for 20 minutes at a time, took a different kind of toll on her little heart.
"She would cry and cry and cry, she wanted to go home," Toyin said. "Oh my god, I couldn't hold it any more. I started crying with her."
That's when her care team at Children's Minnesota stepped in. They began organizing special events and parties to lift her spirit. There was a unique parade to mark 200 days at the hospital, and a big fifth birthday bash in February.
"God bless them," said Temi's dad, Abi Adebisi. "She feels at home here now."
Temi and her parents would still trade it all for a new heart, but they didn't pass the one year milestone pass without celebrating.
"Temi is a beautiful soul," Toyin said. "God will provide."
As the wait continues, the biggest challenge now is just trying to make sure her device can keep pace with a five year old who seems to be powered by pure joy.
"She's cracked (the pump) a couple of times and we've had to urgently change out some of it," said Dr. Putschoegl. "We go in in the morning to examine her, before she wakes up, because it's hard to get her to sit still otherwise. It's our best chance to look at the device without her moving."
Though her wait for a new heart continues, Dr. Putschoegl says that day appears to be drawing closer.
"I'm optimistic that she could potentially be in the next few months," he said. "We know that there is a light at the end of this tunnel and that family will be able to get out of here and have their kid back and have her do all the normal childhood things."
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