Finally - after all the emails and phone calls we got our date - August 19. I'm not sure if it was relief or fear but I sat down and cried. I have been pushing so hard for this surgery, now that we have a date I don't want to do it. I don't want that life for Macsen. I don't want my sweet little boy who doles out hugs to complete strangers, waves hello to everyone like he's the grand marshall in his own parade and trusts Mom and Dad to protect him from all things dark and scary - I don't want him to change, to be afraid, to go through all the pain he will have to endure. And I am terrified he won't be ok, that he'll have some of the awful, random complications we have seen happen so many times in the heartland to our babies when they are put through surgery. On the other hand if he does ok with the surgery, is able to fight of fall the issues that can happen during and immediately after surgery - he can be in a much better place then he is now. He can grow better, he can eat better, his oxygen levels will probably be better. and we won't have another surgery looming forever on our horizon - we will be post fontan - a place where I see many heart kids just thrive.
We are looking at flights, planning logistics of care of our girls, planning an early birthday party for our oldest because we won't be here to celebrate with her. I am making a rewards box for Macsen full of small toys to help ease some of the harder moments. And we are getting ready for back to school which starts in 2 weeks here in Alabama.Busy time. We appreciate all your prayers and messages.
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