We FINALLY made it down to surgery today and everything went as hoped. Now we just have to see how he does getting back off the ventilator. He had some breathing issues again last night and they went back to using the oxygen mask. I'm a little worried we will have some issues with him waking up and getting back to "normal" breathing, but we have everything in place now that we shouldn't be forced to keep or do anything we are not comfortable with.
These are some older pictures, but I needed to share....we hope we get our little boy back soon. He is just struggling now and I hope we can take him home soon and get him back to smiling.