After a lot of thought and prayer, we’ve made the decision to move Evelyn’s care to Mayo Clinic. We did not make this decision lightly, knowing the logistics we’ll be facing being even further away from home. But right now, Evelyn’s mental health and care trumps it all. We are hopeful this move is what she and our family need to ensure she gets the very best care and support possible.
Evelyn will either be transported via ambulance or helicopter. One logistical concern is that our insurance may not cover the transportation portion of the transfer since it’s being viewed as a “lateral” move, offering similar care at both hospitals. Our team here at Children’s Minnesota Hospital is working hard on the wording to help get that expense covered. If not, our COTA fund will help cover the cost of an ambulance ride, we would not take a helicopter in that case.
Once she’s being transported, Evelyn will be listed as Status 7, which basically means she’s “paused” on the transplant list. Mayo will need to do some of their own testing and imaging once we arrive, but we don’t expect anything invasive since she recently had a heart catheterization and has been stable since then. Once testing is done, she will be re-listed at a status 1A, the highest priority, and she keeps her accumulated time which we have been listed for 129 days, but who’s counting.
Evelyn has mentioned she’ll miss Dr. MacIver (her surgeon). I told her that because Children’s Minnesota Hospital and Mayo collaborate in pediatric cardiovascular care, there’s still a good chance he could be involved in her surgery. He even shared that he may be able to perform or at least sit in on her procedure, since he’s the only one who’s done all nine of her heart surgeries so far.
Evelyn is excited to be at a bigger hospital with more to explore and larger play areas. This is a big change for her and for us but we truly believe it’s the best decision for her health and happiness.
We Need You
The transition to Mayo Clinic is a vital step in Evelyn’s journey toward a new heart, but it comes with immediate, unforeseen costs. Because insurance providers often view a transfer between two high-level facilities as a “lateral move,” the specialized medical transport required to move Evelyn safely, whether by ground ambulance or flight, may not be covered.
This is why we are so grateful for our COTA family. The funds raised for COTA in honor of Evelyn are specifically designed to bridge these gaps, ensuring that financial barriers never stand in the way of life-saving care. By donating today, you are directly helping COTA to provide the “bridge” that gets Evelyn from her current bedside to the specialists at Mayo. Your contributions ensure that her family can focus on her mental health and her recovery, rather than the daunting invoice of a medical transport team.
Whether you choose to wear a “Hearts for Evelyn” shirt or make a direct contribution to COTA for Evelyn’s Heart, you are helping this brave, joyful girl get the future she deserves.