Sunday, May 18, 2014

17 days and counting!

It's almost time! I find myself counting down the days till I hop on a plane with P to Cincy! June 4th is right around the corner and Tim is driving to meet us there. I can hardly believe its been a year since we did this for the 1st time. I also wanted to explain what this trip means for us. I think i gave everyone the impression this is the trip for decannulation (trach removal). This trip is 12 days and then we come back home for 8 weeks and then return for 6-8 weeks assuming everything goes great! Last year we packed up and were gone for 6 weeks straight! I didn't know how hard it would be to leave Reid behind and now I know which is killing me. "Ignorance is bliss"- so true! 

June 5th is the day P will have his tonsillectomy and aritnoid trimmed back. That is when we will get the final word as to whether or not Preston is ready for a single stage LTR surgery with decannulation (last summer it was double stage but one of his grafts didn't make it - he got an infection while in the hospital that ate the anterior graft so it has to be redone) So happy the posterior graft looks AWESOME! :) The next single stage LTR surgery we are hoping he is ready for will be scheduled 8 weeks later. So we are looking at early August. Not ideal with Tim coaching in the Fall and starting a new teaching job but we will manage. We are so focused on getting to hear our son's voice for the 1st time (he doesn't tolerate his speaking valve due to the extreme amount of scar tissue surrounding his airway), that nothing will get in our way or bring us down! 

June 5th will be so nerve wracking for me. I am so used to hearing the bad news after some good news each time P is taken back to the O.R. to be scoped. I don't want to be negative but I am just used to 'not such good news' to come next. I am believing this time will be different. Once we get the GO to schedule his surgery, I am also pulling the trigger and releasing the INCREDIBLY AWESOME T-shirt design that was made for us by dear friends who own a printing company! I am holding on to the vision of everyone wearing their shirts on the BIG DAY of his surgery and posting pics on my fb page for support! Tim and I will need it. Preston will be sedated for a week post LTR surgery this Fall. More details to come of what we can expect but it won't be fun and I have been warned by a friend that this will be far worse than the double stage LTR for many reasons. So all of the support we can get the better! :) And what is it about t-shirts that everyone loves? I am BEYOND excited about this and this will also help offset some of the cost of being gone again for another 6-8 weeks this Summer/Fall. Stay tuned won't be disappointed! We will have kiddos sizes too! 

We stay in Cincy for 12 days in June to ensure all goes great with P's tonsillectomy recovery and I will fly home and have roughly 8 weeks to soak up summer time with the boys. :) I can't wait!! 

When we head back for the big surgery, I will have Tim with me for this but then he will have to leave (unlike last year) for soccer season to start and school to begin. I am terrified to be alone. Once again, Preston will be recovering and intubated with trache removed and once they extubate him, he will hear his voice for the VERY FIRST TIME. We plan to video record it. Tim will be there for that! It won't seem real. He will be very weak and go thru drug withdraw from being sedated for that long. I have been told he will need to relearn how to eat, sit up, walk, talk etc. Doesn't this sound fun? UGH! My folks will come out and stay with me for some of this time. I am hopeful I will have a room at the RMH again. I can't think too far beyond the tonsillectomy trip but I know in the back of my mind what is in the near future for us. I want for my son to TALK and be free from the medical stuff he is inundated with on a daily basis. Just wish the process wasn't so complicated. 

We are asking for specific prayers:
-swelling to be down completely on June 5th and everything looks calm in his airway
- posterior graft still looks great
-minimal pain with tonsillectomy 
-minimal issues eating after his procedure
-we get word that he is READY for the next and final LTR surgery 
-safe and uncomplicated travels

Thank you will never be enough but I just want each of you to know that your support means so much to us! We are 2 1/2 years in to this journey and its almost over. I am praying that THIS will be the year I get to celebrate my boys sporting naked necks together!!!!