If he tires out and has to be re-intubated, the next thing they will talk about is a tracheostomy. Of course, at this point, my heart is filled with fear and disappointment at this prospect. I am really struggling to accept this as a possibility. I just don't understand how heart surgery can seem so simple and getting a full term baby off a breathing tube can seem so impossible. I know that to these doctors, and even maybe to some of you, a trach seems like a rather simple solution to our problems. But I have met all these parents in the PICU who's kids end up with trachs and it appears to be very complicated and unpleasant (infection, bleeding out, another surgery, all kinds of stuff). I am so grateful for the staffs ability to help Shepherd, but sometimes it seems the more they do , the more they need to do and it just has this downhill domino affect.
Ultimately, I have got to place my hope in God, and I have to believe that if His help shows up in a different way than I would like, that my hope is not disappointed. It's very up and down. Please pray for us to cast all our hope on God and trust the road he has for our little boy to walk down, no matter how painful.