Results are in.....

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 understands the medical side of things much more clearly than I do. I am still processing. I also have my knitting class I signed up for in 20 minutes so I didn't want to keep all of you waiting seeing how we had hundreds of you praying and messaging me today. THANK YOU SO SO MUCH! Here we go.....

Today was the much aniticpated day in which Preston would be scoped by Dr. Rutter (ENT who rebuilt his air way) and have a flaxible broncospy by Dr. Benscoter (pulmonologist who did the pulmunary function test, PFT). 

Per ususal in the OR we were delayed. Tim and Preston arrived at 12:00ET and his time was originally set for 1:30ET and was pushed back to 2:30ET. During the wait time P got in some movie time and chatted with Tim and the nurses. He had IV placed which took two people, a sonogram, and two tries and then success. Then they watied..........

Dr. Rutter came in to see them pre-op to hear our perspective of what has been going on and he was his usual warm self and curious to see what is happening. 

Now for the results. I was able to be on speaker phone for both consults which was great. First, Tim met with the Pulmonologist, Dr. Benscoter, who was pleased with what he saw. The PFT (pulmonary function test) from Tuesday came back lower than average but not numbers which were overly concerning or alarming. That was good news! He surmised much of his struggle is a result from other impedences located in the upper-airway which get in the way of his breathing vs. poor performance of his lungs and lower airway. We was able to get some great pictures of the pieces he referenced, bascially saying his epiglotus collapases as do his aretnoids, which made hard to assess if he was getting a good seal with his vocal chords. He continued to share the he imagines some sleep apnea which we shared he is hard to get moving in the morning and those may be connected. We are coming back in the next 6 months for a sleep study. 

Then came in Dr. Rutter, who was more disappointed with the pictures he took than with what he saw from an airway perspective. He keeps things light hearted for sure. MIRACLE NEWS FOLKS........he reported the airway is working and looking good, while not perfect it works. NO AIRWAY RECONSTRUCTION SURGERY NEEDED!!!!!!! I see many of you smiling right now reading this news. It was a big prayer request. The Good Lord answered! Dr Rutter was more concerned with all the rest of which seemed to collapse around the airway making his scope all the more difficult. Overall, he had the same concerns about the sleep apnea and function while awake and sleeping vs. the airway needing to be rebuilt. I started to cry when I asked to be sure that no surgery of the airway was needed and he confirmed. I can't begin to describe the relief I instantly felt.

To cut to the chase, both Doctors agreed a sleep study is needed and it will be done here, in Cincy. One of us will fly with Preston for that overnight visit. Working on getting it booked. We had two other ones done in KC which came with nothing to note and they want to be sure it is 100% accurate and want us to come back some time later this year. The good news is nothing they see raises alarms or requires immediate fixes. The piece they are unsure of is what the sleep study will say. Dr. Rutter imagines P will require some more space in the upper airway, above the vocal chords, which is accomplised with a jaw extraction surgery. That part is hard to swallow because I know it's very painful, long recovery and it will change his appearance but if it means he will make tremendous functional gains, we will do whatever we need to do for him. He is taking the news like it's no big deal. 

The complication in all of this is the domino effect caused in any surgeries. Voice, jaw, and airway are all impacted and it is, at this point, a mulitfacted team which will have to coodinate. We know his orthodontist in KC will have an opinion on anyone who touches his mouth. She (and Preston) have worked too hard to get him where he is now. He has had braces for 4 years which included oral surgery and he gets his braces off in 2 weeks. He is very excited to no longer go down to Mercy's plastic surgery clinic for his ortho appointments every 6-8 weeks. Something FUN to celebrate when we get home. How blessed is this child of mine to have such an invested team of doctors in KC and Cincy and who communicate with one another to make sure P is getting exactly what he needs? SO blessed!!!! He has the best of the best overseeing his care and we are very grateful. Traveling out of state to get the best care is exhausting and yet 1000% worth it. I want to encourage any parent considering out of state care to continue finding where you feel led to go. Cincinnati was our 3rd opinion and I will forever preach 2nd and 3rd opinions always!!!

We are packing our bags, cleaning our room and driving straight home tomorrow once Preston's CT scan is done. Tim and I are so eager for a delicious meal, hot shower at home and a night sleep in our own bed. Reid is still not feeling well so he is even more eager to be home. This journey is going to continue and a new one will unfold regarding his jaw. I will be using our blog for updates in the coming months and for future surgeries. As always, thank you for walking this life side by side with us. We could never stand on our own without God's provision and strength and all of our steadfast friends and loving family who pray over us and support us in so many ways! We are thankful beyond words. Off to relax, relish in a piece of wonderful news and learn how to knit! :)

These socks are a staple in our house. Positive affirmations are the key. P has worn Notes to Self socks for every procedure since he was 18 months old. 

Chilling and building a lego set to pass the time before checking in!

Off they go! 

Checked in and wished so badly I could be there. Reid felt terrible all day and was in bed for most of it. I hate having to split up but I had no choice and appreciated Tim's updates.  

Very hungry boy when we got back! 

This was a very fun box full of goodies that arrived today with so many clean options that I appreciated. P LOVED it! I will be sending one of these to friends now that I know about them! Wanted to share!!!