Hello from the ICU

Today is Saturday the 27th of June and Sadie is in the ICU at Shands, she's been taken off some of her heavier medications and had some reduced down so they could start her on milrinone. They did have to sedate her to place her PICC line. Previously Sadie was able to tolerate having lines placed easily but she's had so many done over the last couple of months that she carries some fear and trauma from them. 

The plan moving forward is to step up the amount of milrinone she's on until she reaches a higher dose and then the clock starts in terms of being able to list her at the top of the transplant list. As long as she can tolerate the higher dose of milrinone they will allow her to leave the ICU for the Ped floor while we wait for her miracle heart. Milrinone is amazing medication that helps with the health of Sadie's heart and how it contracts. It's a miracle drug to cardiac patients. Sadie's condition does create a lot of arrhythmias, so it's a fine line of dialing back on the medications that control her electrical rhythm. 

Sadie is starting to ask the hard hitting questions. "Momma why did God make me like this? Momma why do I have to go through this? Momma I miss being normal" And it hits hard every single time. I've seen a saying lately, and I firmly believe that God puts them in front of me when I need them, but this one is "I asked God why he led me through so much darkness and he responded So you know the way out when I send you back in for others". One of the things Sadie has continued to say to all of her providers is "I want to be just like you when I grow up. I want to help kids like me because I know what they're feeling"

My heart is full, this journey is going to be long but we're doing this together, God, our family and yours, Sadie's whole medical team, thank you for being here with us, thank you for supporting us, thank you for taking this one inch at a time with us.