After 11 days of isolation after testing positive for RSV, Evelyn finally tested negative and had her restrictions lifted. Keeping a 5-year-old in a hospital room that long is not easy, and it really takes a toll on her emotionally and physically. Toward the end, she barely wanted to leave her bed. I hate that she had to go through that, but I’m so grateful we made it to the other side of it.
The moment the door opened, we went straight to the play area and spent almost two hours there. She also got to watch The Dude on the Star Studio from Children’s Hospital and even called in to say hi. Those little moments of connection mean everything to her.
It wasn’t an easy day though. She still had some tough things: a deep nasal swab, an echocardiogram, and getting an IV pulled that was no longer needed.
Her echocardiogram today showed that her heart function is still very weak, with her ejection fraction around 15–20%. Her left ventricle (the main pumping chamber) is severely enlarged, and the right side of her heart is also somewhat enlarged and not pumping as strongly as it should. The pressure on the right side of her heart is elevated, and one of the valves on that side has moderate to severe leaking.
The mechanical mitral valve she had placed is working normally, which is good news. The upper chambers of her heart are mildly enlarged, and some of the measurements suggest increased pressure returning to the heart. The good news is there is no fluid around her heart. These scans help the team keep a close eye on how her heart is handling things while we wait for the right donor heart.
We also had our first care conference today. Moving forward, we will be having weekly meetings with a full team that includes PICU doctors, cvicu doctors, cardiologists, social work, nurse management, psychology, and child life. The goal is to make sure we are all working together to support Evelyn in the best way possible while we wait for her heart.
Today’s meeting was about figuring out how to best support her emotionally, developmentally, and medically during this time. We felt heard and taken seriously, which is all we could ask for. These weekly conferences will help us keep adjusting her care and support her in whatever ways she needs as we continue this journey.
Even with everything today held, it still felt like a step forward.
How You Can Help
Whether you follow and share her journey, 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.