The last couple of days have been busy for Evelyn at her new (temporary) home at the Mayo Clinic.
She had a pacemaker interrogation, which essentially looked the same as her last one. The good news is she still has approximately one year of battery life remaining.
Unfortunately, her PICC line has migrated out of place and pulled out by about two inches. The plan is for her to undergo a PICC line replacement, hopefully using the same site so they can avoid having to poke her again. Evelyn’s veins are incredibly small — when they originally placed the line they had to use an infant-sized PICC. Finding “real estate” (veins) big enough to place another line could be tricky.
She will be under sedation during the procedure to keep her calm and asleep. Because of her heart condition, the team will be watching the balance of sedation very closely to avoid triggering any arrhythmia.
While she’s sedated, they’ll also complete an EKG and a lower leg ultrasound.
Sick with RSV
Right now Evelyn is confined to her room on isolation precautions during her contagious period with RSV. Early next week they will retest her to make sure the virus has cleared. We’re really hoping it’s soon so she can get outside, enjoy some of the warm weather, and finally meet some of the other kids on the unit.
We’ll also be having weekly care conferences with the medical team as we transition into this new system. These meetings will help everyone, including us, determine what works best for Evelyn moving forward.
Today was a pretty good day overall. With a lot of help from Mom, Evelyn did all of her assessments and vitals without any behaviors and took all of her medications without a problem.
She didn’t leave the bed much because her energy is still pretty low, but we colored, played a few games, took a nap, and ate plenty of snacks.
Thursday I’ll be doing an interview with the local news here in Rochester to talk about Evelyn’s heart journey, our transfer to Mayo, and our COTA for Evelyn’s Heart campaign. The campaign has been incredibly successful thanks to all of our amazing volunteers and every single person who has posted, shared, and donated to the COTA account in honor of her.
It truly makes all the difference in the world for our family.
How You Can Help
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.