|18 months old after double LTR last summer with is plane :)|
We are at the RMH till Sunday morning and then we check out of our 'short stay' room (waiting list to be here indefinitely is over 2 1/2 weeks- yikes!) and we head to our hotel till end of next week. Kinda stinks but glad we are here for a few days at least. Preston goes right to his favorite play room and we are thankful for friends who we spent last summer with who are also here for another procedure or follow up. We scored tickets to the Cincy zoo and aquarium so can't wait to do that next week. Being back here is a HUGE reminder that Preston's issues are minimal compared to what we have already seen today. Breaks my heart into 6 thousand pieces when I see some of these kiddos who never leave here. :(
Tomorrow is the big day! Not big in the way of surgery but big in the way of ANSWERS! Not sure which is more nerve wracking. Preston gets his tonsils and adenoids removed tomorrow and his arritnoid trimmed back. They will scope his airway and then we consult with Dr R about P's future decannulation (trache removal). We know we have to come back August 5th for a follow up scope no matter what they see tomorrow in the O.R. Between tomorrow and August 5th's scope, it will then be determined if he can have the single stage LTR surgery and trache moved at the same time. That will be a 6-8 week stay in Cincy while Tim starts the school year. We actually have that BIG MONUMENTAL single stage LTR surgery booked for August 11th but we are waiting till tomorrow to see how firm that date stands. I am very optimistic and cautious. We came here last summer thinking it was the end of the journey for Preston and having his trache and God had other plans. This past year has been GREAT! I can't imagine it any other way. I know this summer will pan out that same way! I just want to hear my son's voice desperately. There is too much scar tissue to allow air to move around the trache for him to tolerate the speaking valve. I know this sounds cheesy but i dream of the day he says Momma! He signs it all the time but I want him to have the ability to speak it. I know all parents want that for their children.
PLEASE PRAY FOR US! Not sure what specifically to pray for- just that whatever is meant to be for P will happen and we will have peace after the consultation. Your support is what keeps our heads up and gives us encouragement! I always fear of our friends and family growing tired of hearing about this journey. We are sick of it so surely everyone else is too, right? And then I get flooded with texts and emails and fb messages today with words of encouragement and I had tears of thanks. Thankful for our dearest friends and family (YOU!!) who have not given up on us. We love you!