Not what we planned!

Ok, well...first off, thank you for all your prayers and encouraging words! I know they are what get us through days like today without losing hope! We are back home now after a long 'rollercoaster' day. Surgery started a little late and we were expecting approximately an hour and a half, so when they came and got us at 45 minutes, we knew something wasn't going as planned (horrible feeling!). After talking with the doctors (ENT & pulmonologist), we found out that they did the bronchoscopy, however did not remove any tissue because of what they saw during the scope. They found some tissue near the epiglottis that was 'concerning' - tissue they weren't really able to see on prior studies because of other tissue that was covering it and since has been removed. It sounded like they thought the new tissue in question was residual teratoma (however, Preston and I don't think it is) and after we talked to them more, they said it could also be scar tissue or inflammation or a number of other things but before they went 'a-cuttin' they wanted to make sure. That is why they stopped and now want a MRI. That was the second area of disappointment and frustration. Since Carson is so young, MRIs mean he needs to have sedation. I was hoping they would have just done the MRI today (while he was sedated) but they told us the MRI was booked solid until next week. Arghhh! You would think they could fit us in...huh? I mean we just drove 6.5 hours one way to get here. So long story short, we will now need to go to St. Louis at some point (probably sooner rather than later) to have the MRI, and then after the Cincinnati team looks at it, we will decide the next step, which probably means another trip to Cincinnati to do something similar to what they had planned today. This does not fit well with my Type A personality and my liking to follow the original plan!
So, thank you, God, for another lesson in patience and realizing that my ways are not always YOUR ways! : )
The other piece that is probably even more frustrating, was after the scope today, Dr. Cotton, again said, "His trach isn't going anywhere soon." To which I asked, "What do you mean? How long?" This time the reply was 5-10 years! I just want to scream sometimes (I don't, but I really want to). It is so hard to think you may actually get some good news and not only, NOT get good news, but get even worse news than you thought. First we go from, probably by a year old he will have his trach out, to 'maybe he will have it for life', to probably 4-5 years, and now we are to 5-10 years! Golly, gee, whiz!
As I'm writing this, I can just hear..."Be still" "I know the plans I have for him, plans to prosper him" But it really is SO hard to let go of MY plans and MY hopes.
Okay, so now that I've finished the ranting...there were a few good things! First off, they did not see any signs of inflammation or generalized irritation in his airway, which is wonderful! Two, they still believe his trach WILL come out eventually! Three, Carson is still sweet as can be...he rolls with all these punches and always comes out with the sweetest smile and personality! He was SO excited to be home tonight with Kellen!

Thanks again for your continual prayers! We will see what the next step brings and on the bright side, this just leaves room for more miracles!