Thursday, June 5, 2014

From barf bags to BEST NEWS ever! Lets celebrate with T-shirts!

The LORD will fight for you; you need only to be still. Exodus 14:14 This is the verse I have leaned on all year and boy was it hard to be still but I embraced this past year with open arms and I now see how God has fought for us big time! 

Let's be honest, after yesterday, any news today would be great! ;) Well my friends, we have some amazing news! Tonsils and adnoids are OUT and Preston will be TRACHE FREE in approximately 8-10 weeks! Yes, I said it and we are believing it. It hasn't sunk in yet. We have a plan of action after consulting with Dr. Rutter. All details are below and further details follow with the  announcement of P's t-shirts that were designed for us!! 

Preston is recovering and its been a rough recovery :( He had a plug right after surgery and that was not fun. He took 2 hours in post-op to come out of anesthesia and wake up. His nose is a faucet, he needs his mouth suctioned every 5 minutes and his trache site is sore from a few other things. Thank goodness for Toy Story and his new penguin from RMH to help distract him. lol It's the little things! Our favorite nurse from last summer was his nurse today and she is about to have her 1st baby (a boy!) and I can't tell you how this complex airway floor feels like home in a way. She was so excited for us to get exciting news and loved seeing Preston. 

After only 2 hours in the O.R. this time, Dr. Rutter sat down with us and dove right in with the details. He said, "I can't begin to tell you how much better he looks and I actually think he may not need the single stage LTR surgery to get his trache out"**insert our jaws dropping to the floor here** Wait what?? We were taken back. He said this is the best Preston's airway has ever looked and he sits right on the fence to MAYBE needing the surgery or maybe needing his trache downsized or a hole drilled in it (to allow more air to move around) and some capping trials need to take place first to give him a chance before surgery occurs. I am so used to bad news at every visit so this was a weight lifted off our shoulders for sure! He wants to do some trials in August when we come back. His next big scope is August 5th and we need to plan to stay for 3-4 days (possible 4-8 weeks IF he ends up needing the surgery- won't know this until we see if Preston tolerates the capping trials- if he doesn't tolerate them I will stay here and he will have his big LTR surgery). The good news is Tim will still be off for summer so we can come together for this next scope! Yay! Tonight we are celebrating this amazing news! Preston has come SO FAR and we are nothing but impressed and pleased with P's team of doctors and nurses who care for him as if he is their son. They truly love him! Yay for today! :) Happy tears are the best thing I have felt in 2 1/2 years! 

Now for the FUN part- P's shirts! Aren't these GREAT!!!!


We couldn't think of a more fun way to celebrate this milestone for all of us! Our dear friends sent us the design and I just can't stop smiling when i see it! We plan to have a HUGE decannulation party for him and for ALL OF YOU who have been by our side through this journey and we want everyone to wear their shirts for a huge group picture! I want to have the picture made into a canvas for P's room! Plus, we have to travel back in 8 weeks for yet another trip (and these t-shirts will of course be a huge help with all of our travel expenses). The adult shirts are $11 (sizes small- 3xl) and $7 for the kids shirts (ask me about sizes). The shirt colors available are white, pink, green, orange, blue and purple. Our goal is 500 shirts and when we reach that goal, Tim and I are drawing a name/family to get reimbursed for their shirt order as a huge THANK YOU. If you are interested in a shirt, email me with your order at lwalkermk@gmail.com - shipping will be free if you live out of town! I would LOVE to have everyone wear their shirts on the day of his next scope (August 5th) and send me a pic or post to my fb page (of you or your family wearing them). I cannot wait for the day he is old enough for me to show him the pictures of all of you sporting his shirt and showing your love and support for him (and us). 
Our day started out walking b/c surgery time wasn't till 11:30 and we needed to keep his mind off food lol 

He was SPENT after surgery was delayed by several hours. 

And someone feels like crap :(

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