Tuesday, May 28, 2013

Countdown is on!

We have started packing for our trip! How do you pack for 4-6 weeks? I am doing my best! Our bedroom is nothing but piles to make sure we don't leave anything behind. I have 2 big boxes of Preston's supplies! My folks can always bring stuff out for us if we leave anything behind as they will be visiting 1 week post surgery to be with us! These next 4 weeks are going to FLY and I want to soak up the sun with the boys as much as possible while I am home. I have a few dates in June with just Reid planned. I am REALLY looking forward to them. Tim and I are going to take him on a date the weekend before we leave so we can spend time with just him. I know he has no idea what is about to happen and he won't ever remember this. It is going to be much harder on US than it will HIM. Thank goodness....that is how I want it to be! I am trying to wrap my brain around the fact that Preston is having his LTR surgery in 4 short weeks. It seems surreal. I am gathering up my favorite bible versus to lean on. I am praying for so many things! Mostly for Preston's health and well being and a successful new airway. I want this so badly for him. I am trying not to worry about him and I want to trust in God instead of letting my nerves take over. He is so precious to me. I hold many raw emotions from the day I realized what his trach would mean for him. I let it define him in the beginning when I was overwhelmed by our circumstances and now I know it has nothing to do with HIM. It is just the way he breathes.....not for much longer God willing! I would give ANYTHING to give him a FUN summer filled with trips to the pool, our morning runs that he LOVES, and lots of time at the park and all of this being done with his best buddy, Reid! That is obviously not the plan so I am embracing the summer we have been given for him but I would be lying if i said it wasn't eating me alive at times. I am graciously asking for your prayers! In the midst of these crazy emotions, I have such a sense of peace about this trip too!

Tim is wrapping up the school year and will be done on Thursday! Hallelujah! I can't wait to have him home! I need his fun spirit around the house and his support the most! He is so positive and the boys love their wrestling buddy! And then around August 1st I am ready to kill him and wonder when school will be starting! LOL :) I am sure he feels the same way!

We have spent the last 2 weeks finalizing all of our travel plans and arranging a 'normal' situation for Reid as much as possible. We leave on June 24th and Tim is driving to Louisville's airport to meet Preston and me. I will be flying with P and Jessica (our day nurse) and once we arrive in Louisville, Jessica will fly back home and then the 3 of us will drive the rest of the trip together to Cincinnati and arrive at our hotel. We have 1 day to get settled, unpacked, and repacked for our hospital stay. Then on June 26th its surgery day for P! Tim and I will be taking turns staying with P while he is in the hospital post surgery and one of us will be staying at the hotel until we get into RMH. I sure hope we get to the top of the waiting list FAST! The hotel is 20 miles from the hospital and RMH is across the street. My folks plan to come visit around July 1st. My in-laws plan to come visit WITH Reid a week or 2 later. All of this could change of course depending on P and his recovery but its a tentative plan for now.

Many friends and family have asked about Preston's surgery and what specifically will be happening. I wanted to just explain so everyone knows. This is the best I can explain it:
His surgery will be anywhere from 5-7 hours (I can't even handle that thought so I am blocking that out!). A horizontal incision will be made in his neck above his trach and that is where they will get the damaged portion of his airway.  Dr Rutter will determine what size cartilage grafts will be needed after he opens his windpipe.  Once he determines this, he will harvest the grafts from Preston's right ribs. It will take about an hour for the anterior graft to be placed and 2 hours for the posterior graft to be placed. A silicone stint will be placed in the airway and secured with sutures in the middle of these 2 procedures. From there P will be sutured up, taken to the ICU, and will be sedated for awhile. For the following 1-2 weeks he will be fed by G tube. He will have a nutritionist and feeding team to work with him take food by mouth once he starts to heal. 1 week post-op Preston will be taken again to the OR and the silicone stint will be removed through his mouth and the transplanted tissues will be examined to ensure they are healing and growing and the airway does not collapse on itself once the stint is removed.
Our hope is he will be released with the plan to have a bronch 1-2 weeks later to make sure there are no signs of collapse. We will take everything one day at a time and hang out in Cincinnati until we are given the 'go' to head home for a few months before we return again.  I will be updating our blog as much as time allows!
I hope everyone is having a great start to SUMMER and we covet your prayers, support, and love!




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