Friday: A Step in the Right Direction

Willow has been off epinephrine for almost 24 hours and they have been monitoring how she has been doing. She has stayed in partial heart block (every other beat is going through) at 75ish beats per minute.  The doctors are less concerned with the numbers and more concerned with how she responds to and completes every day tasks. Because she is sleeping well, eating well, and is content, they are very happy with how she is doing. Both the attending doctor and her surgeon stopped in today and said that because the infection is responding so well to the antibiotics, they will only require 2 weeks antibiotics by IV and the rest can be oral. 2 weeks will be this coming Wednesday (Sept. 5). If her heart rate remains steady between then and now and she continues to do well with everyday tasks, they will discuss release dates on Wednesday. .
As much as the thought of going home makes me giddy, I am also very uneasy about this. We will go home, where there aren't monitors monitoring her heart rhythm all the time. And for a mother who already battles worrying about keeping my babies alive, this just adds to the anxiety I daily battle. And even though she is doing well in partial heart block, we have seen what she acts like out of heart block and it is better than we are seeing now.  I asked the doctor today what this will mean for Willow's life- what could I see with a daughter in partial heart block. She said 1. Her rhythm could still come back, 2. I could see nothing, there are lots of kids out there in partial heart block and you wouldn't know or 3. Around the age of 2-3 when she starts to get more active and run around more, she may get tired more easily and have to sit out. If that is the case, then we will come back in and get a pacemaker when her body is stronger. So that is where we are at. A very grey area. Please continue to pray that this won't be the case and Willow comes out of heart block soon into perfect sinus rhythm.