Evelyn is officially OFF her Milrinone drip after 9 months (276 days)! Milrinone is a medication that helps the heart pump more effectively while also relaxing blood vessels, making it easier for the heart to circulate blood. It’s been an important part of supporting her heart through this journey, so seeing it come off is a huge step forward.
She’s had repeat echocardiograms while weaning off of it, and so far her right side of her heart has handled the transition really well. We’re incredibly thankful for that.
She’s also currently being weaned off her IV Dex which helps keep Evelyn calm and comfortable, and if all continues to go as planned, by next week the only IV medication she’ll still need is Bival, which is a blood thinner that prevents clots from forming in her Berlin heart. Everything else she’s taking by mouth like an absolute champ.
There hasn’t been a whole lot happening around here lately, and honestly… we’re grateful for the calm, uneventful days.
I think Evelyn being tethered to her mechanical heart support, the Berlin Heart, better known around here as “Thumpy” has been harder on us than it has been on Evelyn. Any time we want to leave the unit, we have to coordinate with a perfusionist or ECMO specialist to make sure someone is available to go with us. Sometimes, like today, it just isn’t possible because of staffing, emergency surgeries, or other patients who need them.
We know this season of our journey is temporary. But temporary doesn’t always mean short. This chapter has been long, mentally exhausting, and incredibly hard at times.
Even so, we’re choosing to celebrate every milestone, no matter how small they may seem. Every medication she comes off, every good echo, every quiet day… they’re all steps bringing us closer to the finish line.
How You Can Help
A big thank you to all who have donated to COTA for Evelyn’s Heart. Because we raised over $100k within our first 6 months of fundraising, we have earned the $10k challenge grant through COTA! We are so grateful for how our community has rallied for Evelyn in every way and helped us reach this milestone. We literally could not do this without you.
THANK YOU!
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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.