Earlier in the day, Evelyn was about to get her tube out. The team had been slowly weaning support and watching to see how she tolerated everything through last night. We were hopeful we may finally get to see her beautiful eyes open more and hear her sweet voice again soon.
Unfortunately, 30 minutes before extubation could happen, her nurse noticed dark blood in her stool, and the drainage coming back from her NG tube had turned dark brown/maroon in color. After evaluating her, the team determined Evelyn has an upper GI bleed. They’ve now started medications through her IV to help decrease stomach inflammation and protect the lining of her stomach while things heal. They also had to carefully adjust her blood thinner settings and temporarily stop aspirin to try and balance the bleeding risk safely with the support her heart still needs.This can be common in kids on high anti-coagulation who are on ecmo and LVADs. Because of all of this, the safest decision was to keep her intubated for now while her body rests and heals. Another bump in the road for our sweet girl.
Tonight, the nurse practitioner asked me if I had any teenagers, and I pointed at Evelyn and joked, “Yes, right there, she’s a big daddy’s girl.” Right then, she opened her eyes a little as if she was listening. I walked over to her and said, “Hey Evie, I’m going to go get daddy okay?” and she smiled SO big through her breathing tube and bobbed her head side to side, I couldn’t believe it.
Then I told her, “Okay Evelyn, I’ll see you in a little bit okay?” and she shook her head yes and smiled.
After days and days of machines, sedation, setbacks, and fear… seeing her little personality peek through again meant absolutely everything to us. I cried as I walked out of the unit. I needed that so much. Our sweet girl is still in there, and she is still fighting.
How You Can Help
Mark those calendars and get ready! The big fundraiser garage sale for COTA for Evelyn’s Heart is almost here! Thank you to everyone who has donated items to the garage sale! If you would like to help with the sale any of the days, please reach out to Rose Thompson on Facebook.
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.