We’ve had a lot of big updates over the last 24 hours, and while none of this feels easy to say, we wanted to share where things stand.
The good news is that after starting dopamine, Evelyn has shown some small but encouraging signs of improvement. The pressure in her lungs has come down, which tells us the medication is helping her heart in some ways. We’re grateful for that.
The harder reality is that her heart function itself has not improved. Her EF remains around 10%, and while the medications are helping support her, they are not fixing the underlying problem.
After many conversations with her care team, we now know that an LVAD (a mechanical heart pump to help do the work her heart can’t) is no longer a matter of if, but when. Right now, we can expect placement of her LVAD sometime next Thursday or Friday, depending on how she does over the next several days and whether they feel they can safely “baby” her a little longer on medication alone.
This is a major step, and not one that comes without risks. Because of her mechanical mitral valve, she has a higher risk of stroke. There is also concern that mechanical support could increase the likelihood of her developing antibodies, which could make an already difficult donor matching process even more complicated. These are heavy things to hold, but we trust her team and the careful thought going into every decision.
Over the next few days, we’ll also be meeting with her surgeon to go over everything in detail — the risks, how long surgery could take, recovery, and all of the in-between. To say we are scared is an understatement. Even putting her under general anesthesia alone carries significant risk because of how fragile her heart is right now.
On Sunday, we will be moving over to the cardiovascular ICU so she can begin getting acclimated to the staff and space there before surgery. Today, we briefly walked over to “plant the seed” and help prepare her for what’s ahead. She didn’t take that news very well, which honestly we expected. Change is hard, especially for a little girl who has already had to adapt to so much. We’re hoping that, like everything else she’s faced, time and familiarity will help her adjust.
Through all of this, one thing remains the same: she will still have her birthday get-together, and Monday is still her birthday. We are holding tightly to those moments of joy and celebration, even in the middle of uncertainty. She deserves to feel every bit of love and excitement that comes with turning another year older.
As always, Evelyn continues to amaze us with her strength, resilience, and ability to keep smiling through things no child should ever have to face.
How You Can Help
We’re getting ready for Evelyn’s birthday and the big fundraiser garage sale for COTA for Evelyn’s Heart! Thank you to everyone who has donated items to the garage sale and reached out to help celebrate Evelyn’s birthday! If you want to send a birthday card, visit the Facebook page for instructions on how to get a hold of Kelly.
Garage Sale Details:
June 4-6
Location: 7040 Eagle Trail, Centerville, MN
Time: Thurs. and Fri. 8am to 5pm
Sat. 8am to 12pm
Get your “Hearts for Evelyn” T-Shirt
Join our “Hearts for Evelyn” Facebook Group
What makes our partnership with COTA so great is that they will be with Evelyn throughout her lifetime. Every dollar donated to COTA in honor of Evelyn goes to transplant-related expenses. Thank you for being here with us for Evelyn.