Extubated!!!!

James was extubated (breathing tube taken out) this morning about 6 a.m. and is doing very well. They lowered some of his medication to try to help him wake up more. He has to wear a BiPAP mask for now to ensure that he's breathing adequately on his own.

We've wondered for a week or so now whether James' movements are truly purposeful or whether they are just reflexive. The answer to that would make a huge difference in the decision on which road to go down next. But this morning, with the BiPAP mask on (by the way, James has ALWAYS hated any sort of mask covering his face), James started fussing and we went to talk to him and reassure him and we noticed that James was actually crying...clearly not happy about the mask. Seems terrible to be excited about crying, but crying is clearly not reflexive.

Over the years of dealing with James' brain tumor, we have known many families who dealt with end-of-life issues, some with an amazing grace from God. I often thought I could never do that. But over the last month I have begun to understand why they chose what they did. There comes a point where it ceases to be about how much you will miss your child and it starts to become how much you are willing to let them suffer. As we've watched James storm over the last 3 weeks, we realized that we don't want him to have to do that forever. Although our hearts would hurt more than we could ever know, we don't want him to survive only to be in much pain or to endure surgery after surgery. So it is our prayer that God will make James well (not perfect, but not suffering) or take him Home.

Having said that, we are encouraged by how James is doing. God hasn't taken James Home yet and we have to believe that there is a reason. James continues to amaze the doctors. Now that he has the breathing tube out, the next step is to help James wake up and assess where we think he is. That is the fork in the road that will determine whether we move forward with treating the tumor or not. We are praying for God's wisdom.