ANN ARBOR, Mich. (WZZM) - They said it would only take three months but some health problems are causing a Muskegon's Sofi LaPres to wait a little longer for her heart transplant.
You'd never know to look at her that she was living with only half a heart. The cute 18-month old with a smile that melts your heart, is growing and laughing. And her parents are wondering how much longer she can wait.
Dr. Richard Ohye is Sofi's Cardiac Surgeon at the University of Michigan's Mott Children's Hospital and he remains confident a heart will come in time. "We're gonna keep her on her medication. That's helping her heart a little. And then it's just the waiting game."
A game that's beginning to get a little frustrating for everyone. "Hearts become available and they are either not good for her because of the anti-body or because of function or something like that." says Dr. Ohye.
So until the perfect heart becomes available for Sofi, her mom and dad do what they can to keep her happy.
Long walks through Mott Children's Hospital are a common part of their routine as they try to give their daughter a break from her hospital room. "At first, you think we'll wait three months and we'll get her heart and we'll go home. But it's been more than three months," says her mom. "And it doesn't look like they'll be accepting an offer anytime soon because they want to get her antibodies down which is a good thing, but that gives her heart more time to fail."
Sofi's had a few setbacks. A brief stay in the ICU over the last month forced her to be temporarily removed from the donor list until her immune system got stronger.
But it's still not the best and Dr. Ohye is coming up with ways to make sure Sofi gets the next available heart. "When I actually go to do the transplant, what I can do is do an exchange transfusion and drain out all her blood and replace it with blood from the blood bank that won't have those preformed antibodies."
It's hard to think about, especially when you look at Sofi, she just seems so ...healthy.
"As happy as she looks right now, she's not always stable. They have to intervene at least once or twice a week." says her mom Krystin LaPres. "It's like the longer you wait here, the more of a reality it becomes."
And they begin to wonder if their story will have a happy ending. "There's more uncertainty about 'are we gonna bring her home or not??'"
Sofi LaPres' mother Kristyn stays with her at Mott Children's in Ann Arbor. Her dad Mike commutes back and forth from Muskegon as often as possible.
Sofi has her own website that her mom keeps updated with pictures and condition updates. You can access it by clicking here.
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