Something is off

I can tell I'm holding my breath, always waiting for the other shoe to drop, checking Kyle's temp over and over everyday. Each morning that I go into his room to unattach him from all the vital tubes he needs at night and I hold my breath, scared that he'll have a fever, another infection and we will have to immediately head to the hospital. I need him to get to Tuesday. This morning no fever, but an increase in work of breathing and his color is off....fills me with dread. His bile output has been up all week. No major increase last night, so while he's still way above normal it's now staying about the same.

We are decorating for Christmas today...we usually make a huge deal about it the day after Thanksgiving but since we won't be here I want it done before we go. I want Kyle to see it all and for him to feel good about it. I want Jack and Alex to decorate with their brother...I want to feel my families happiness before we separate again.

xoxo

K