Rivy's 🫀 Surgery Tomorrow - Update 2 -

Good morning family & friends, 

Riverlyn has had quite a journey post-op. She's had bouts with fevers and involvement with the Infectious Disease dept., withdrawal issues from multiple medications, consultations with hematology, gastroenterology, and nephrology, and feeding tolerance challenges. For the heart, the cardio team discussed her case this week as well. In summary, we've made medication changes and additions to work toward her stability and progress on all fronts. She's taking a few new things to help her tummy and one new thing for her heart. The melody valve is working really well in the mitral position, however the sheath it sits in is a bit long and is causing some obstruction. The good news is, she will continue to grow into this valve that can be maintained and adjusted by catheter rather than open heart procedures! 

Things keeping her in the hospital include IV medications and feeding (she just hit the 50% volume mark yesterday). Progress has had to be very slow in this recovery to make sure changes to her very complex picture have been one at a time to not cloud her responses. Overall we feel very confident in this valve and hope that this slow-and-low period will yield a very long time at home without readmission. In the meantime, we're making our time here as warm and homey as possible 🤍 Next week Riverlyn will be getting a cranial helmet to help her compensate for being bed-ridden so much of her life. It will be adorned with promises and flowers to reflect the beautiful, delicate flower she is 🌼

My Heart books are packed and ready to send for those who have graciously supported us! 🫀💫💌