August

Somewhere between the pediatric floor's dog visits with Sally and the CICU starting to walk again- and then moving to a smaller room- it became August. 

I want to write to you and tell you that we've made so much progress and that every day is a step forward and that it's all smooth sailing-- but the truth is that it's time for a small rest on this journey. So many people have told me that sometimes you're going to have days where progress is moving backwards and I never really grasped that- until now. 

Last night Sadie's heart rate passed the lower threshold that the team set for her to maintain- and she had the most intense night of arrythmias that she's had in a while. It was scary. The rough part was that the nurse had to wake her up every time her heart rate would dip too low- the good news is that Sadie was fine every time she checked in on her- her mind was good, mentally she was 100%, her blood pressure was good- it was just her heart that was having some trouble figuring out what beat to catch. The big question is why. Unfortunately there's no real answer here yet- and it's still believed that the medication built up in her system from pre transplant is the culprit- so- we wait. Last night was a reminder that this is still an uphill journey and there are some bumps along the way- and sometimes those bumps are going to knock the wind out of us. 

So we wait. 
We pray. 
We build all of the legos, color all of the pictures, dye all of the paper flowers, do all of the science experiments, and have Sadie ask every single doctor and nurse 'when can I go home'.