Well, today has been BUSY! I finally saw Lou Ferrigno's little brother after Tim telling me about him. Tim was right- total look alike! I got to say good-bye to a few of my favorite momma's and their kiddos. P sure knows how to make friends! I will miss their faces in the kitchen and hallway. Most of all, I will miss their unspoken understanding when its been a bad day. These mom's 'get it' more than anyone else I have met. We have the room totally packed up and we will clean the bathroom in the morning to complete our 'room check out list' that RMH gave us. Preston is scheduled to head into the O.R. at 1:06pm tomorrow. Tim and I are on our knees praying that BOTH grafts look fantastic and Dr. Rutter is pleased with how his airway looks. Preston has been through ALOT and we want 100% confirmation the surgery was a complete success! We are hoping he is now a candidate for the speaking valve and might even try it tomorrow. Not sure yet. I really hope Dr. Rutter says he doesn't want to see us for at least 6 weeks. The thought of coming back in 4 weeks is a bit much to handle after living away from home for this long. But whatever he thinks is best is what we will do of course. We had a follow up appt with speech today and his feeding is going good. Its a work in progress but he is eating regular food so that is great! Not much aspiration either so that is great! It wouldn't be a typical blog post without mentioning Graeters one last time. We made a final stop there tonight so P could get his very own scoop! He is hooked! The minute we walked in, he signed 'more'! LOL I am not sure if that is something I should be proud of or embarrassed by. No more ice cream for this family for the next 6 months. :)
Tim and I can't believe we are on the road to being HOME. Most of all, we still can't believe P actually had the LTR surgery. I think we both have been in such a zone this whole time, we haven't taken a minute to realize he had THE surgery we talked about for sooo long. Now its over. Our son no longer has a damaged airway. Decannulation will confirm this but in our minds, we already know he is on the brink of that final step. NAKED NECK HERE WE COME!!!!
Cincinnati will hold such a special place in our hearts and Preston will certainly grow up knowing all about this journey! He will also grow up knowing the amount of support and LOVE our circle of friends and family gave us (that would be YOU) to make this trip a total success for our whole family!!! Can't wait to update our BEST NEWS YET after Preston's bronch tomorrow! Stay tuned!
P.S.- Tim is DYING to see Reid. I took video while I was home and it's going to be pretty fun for Tim to hear all of his new words in person once and for all. He will also fulfill Reid's request for 'Dada' that occurs more often than not. What a sweet reunion that will be next to the boys reuniting! :)
Subscribe to:
Post Comments (Atom)
Sleep study complete!
April 28th feels longer than 4 months ago when I last posted an update. I promised myself to not think about returning to Cincy for the slee...
-
The Scoop from the Scope (Tim came up with that title) Tim wrote most of the medical update to this post. My brain is fried and he always u...
-
We are done with dinner and processing all that came our way today. We all slept great last night, had a nice slow start to the day and Tim ...
No comments:
Post a Comment