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 sleep study we booked right after returning home and embrace summer to it's fullest. We did just that! Boys started 7th grade (middle school) on August 13th and the sleep study was August 16th. They missed Friday of the first week of school to drive to Cincy which didn't seem to be a problem. We drove home Sunday. 20 hours in the car in 3 days is no joke but we made the best memories with dear friends hosting us for the weekend. What a gift! The Bells continue to show us loving hospitality and what an example for our boys to see this over and over again. Thank you Chris and Misha for your friendship, endless support and prayers. Preston was really happy to have Reid come along too! It was wonderful getting to spend time Friday night at our friends country club to let the boys swim and eat pizza and catch up. Wish we could have had more time to be with them. Saturday we took the boys to the zoo and P was able to finally show Reid his favorite parts of the zoo. After having been there many times with just P, it was fun to all go together. I included the lovely picture taken by one of my pre-teens who couldn't help himself when he saw the male kangaroo features LOL 2 Graeters ice cream stops were the highlight of course! Preston and I were dropped off at the hospital Saturday evening for the sleep study and Tim was able to get Royals/Red's tickets to take Reid to the game for the evening. It worked out great. We were done Sunday morning and hit the road to come home. We still don't have the results. Once those come in, I will update with findings and next steps. We have determined our family has become pros at turning lemons into lemonade and that is what the quick weekend to Cincy became for us. :) 

The lovely picture my child took because he couldn't get over the size LOL 

All hooked up and ready to sleep. I am still trying to figure out how someone is supposed to get a good night sleep like this. 

Home, Sleep study booked and future jaw plans

 

It's been one week since we came home. This past week was the busiest of the entire year for the boys and gave us no down time alone to hold space for all we went through last week in Cincy. Tim and I took time together today to finally process everything and discuss future plans and possibilities. We have learned it's important to do this. Proud of us for doing it because feelings/emotions bubble up and that isn't always comfortable and fun. It's important to feel it all and put one step in front of the other. 

Cincinnati solidified the following for us:

-Preston will always have his floppy airway (Tracheomalacia) but it's stable and no need for a recontruction (again, thank God) but can be a big reason for his extreme loud and narly coughs when he is sick and why it takes him longer than the average person to recover from illness. 

-His voice is hard to hear for a reason. Feels good to no longer question ourselves about the strain he endures to project his voice. We have a modification in place for when he needs to public speak or talk to a very large group of people (example: scout events or school productions) which will be a microphone. It will keep him from straining and be heard.

-He has trouble chewing for a reason. He can barely chew and especially eat meat unless it's so tender it melts in his mouth (no wonder why he loves french dip sandwiches). His jaw is uneven. The right side is shorter than the left. And his teeth don't touch well. Even after 7 years of orthodonticts (spacer, braces, oral surgery) he still has a long way to go and jaw surgery is the next step.

-He needs relief for his jaw sooner than later. We are praying sleep study results will reveal a timeline for us. We always planned on jaw surgery once he is fully grown but it's looking like much sooner now. 

-Sleep study is booked for August 18th at 7pm. Just Tim and Preston are going for this visit. Plans are still in the works for how they get there. 

-Vocal therapy is on hold till we hear sleep study results for a myriad of reasons.

The visit was exactly what needed to happen and there is no greater feeling than peace, validation and answers when going through all of that. 

Preston is doing great. He knows jaw surgery is down the road probably sooner than later. He is too old to not know what was discussed after his scope. He is fine with going to Cincy for a sleep study and glad Tim is going with him. We have shared with him we are finding the BEST doctor for his jaw extraction because that is what he deserves and it will most likely be out of town and we will all go and support him because that is the only way our family will handle future surgeries and he felt very comforted by that. I am grateful he is so resilient. Reid is doing great. He is SO glad he went with us and he has a much better understanding of why Preston can sound so awful when he is sick, take longer to recover after illness, sound the way he does, and struggle with chewing food or being able to open wide enough for a piece of bread let alone a sandwhich. I could spend a whole blog on this but I won't....I will just say it has been a struggle in this area in our home and it's not been fun. Until you go and hear some of these things shared by professionals, it doesn't resonate the same as when mom and dad try to explain it. It was a fruitful visit in so many ways and his heart is heavy for P. He told me how he wished Preston didn't have to go through this but he would always be there for him. Paycheck of the heart in that moment for me! 

I came home last weekend with my wheels turning. I never sit on news for very long without taking action. I just don't. I researched this past week and already have 2 doctors picked out we plan to visit for 2nd and 3rd opinions regarding jaw extraction surgery. One is in Omaha, NE and the other is in Iowa City, IA. More to come on why those two doctors/locations are who we will be seeing. More testimony of God's provision through our journey and next steps. Gives me chills. 

Want to wrap this blog post up by sharing one thing I have felt along this medical journey and that is a special kind of solidarity and circle of support from mom's who have worn similar shoes we wear. Once I was connected with those medical moms/families early on, it filled us with encouragement and hope and continues to do so. It also unexpectedly pointed us to different doctors based on our needs and their experiences. Something I never knew we would need. Well, we are at that point again for a new journey on a road we have not traveled down yet. Jaw extraction surgery is new for us but not new for a friend of mine who I immediately heard from once I posted about our next steps. SO grateful for her. Her text at one point saying "I am always here for you" brought me to tears. Nobody wants to travel down an unknown road alone. God is generous and has truly taken care of us with the special people he has placed in our path for the past 12 years and guided us where we should go. He is still taking care of us. It's been a gift I continue to have deep gratitude for. I know not everyone has that. I also hope I can be that friend in the same capacity for those who need it. For now, we wait till the sleep study and take our next step forward once we find out those results. We plan to enjoy EVERY SINGLE MINUTE of our summer with the boys. It is not lost on me we could have been in Cincy living at the RMH for an airway surgery. We plan to make this summer extra special knowing we get to be HOME in KC and we also get to take our much anticipated family vacation I wasn't sure we would get to take. 

Yellowstone and Grand Tetons here we come! 

I plan to update when I know more. Thanks for walking this journey beside us, friends!!!! 

Reid sporting his FC Cincy jersey and P sporting his Bearcats shirt
on Monday when they returned to school. 

Roxy was excited to be home and of course we went on a long walk.

Back to baseball. 8pm games are not for the faint of heart
but felt great to be back with our baseball family.

District wide Band Concert was fantastic with good buddies.

Reids 2nd baseball game for the week was rained out so he had the chance to be in the Jazz band performance at the CAA. He had a solo and loved being able to be there.

Wrapped up our School Carnival Era on Friday night. That concluded Tim's time volunteering annually as 'security' with other dad friends and my time doing Cake Walk with my mom friends. Such great memories and the boys had fun.  

Tim and I took P on a bike ride and dog walk to enjoy the cooler temps after the storm and enjoy how beautifully green everything is right now. He loves nature and riding throught puddles and it was nice to have alone time with him. 

Wrapped up the week at Reids baseball tourment this weekend. These boys played fantastic and we dodged the rain on Saturday to play and win both games. 

                                          

    So glad we were back and didn't miss any of these activities this week!!!!! They were so important! 

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!!! 

Special day, change of plans, highlights and prayers up for tomorrow

Today was a nice and much needed break from the hospital. Didn't end the day how we would have wanted but this journey is full of ups and downs and we are used to flexing and having things change. It still was a special day for 2 reasons:

1. With help from a special friend (thank you Lexie 💗) the boys got a private tour of TQL Stadium home of FC Cincinnti. The boys received swag bags and P was gifted a scarf and a welcome sign on the jumbo tron. They outfitted a locker for him. Reid was spoiled too and it made me happy to see he was just as much apart of the special touches throughout our experience. A former player gave us the tour and he was so personable! A day they won't forget! One thing I really worried about prior to leaving was how we would pass some time in between days at Cincy Childrens due to the boys being 12 and all of the things we used to do at RMH, they have outgrown. Preston would spend hours in the play rooms and build trains and go to the childrens museum and all of those weren't options anymore. Thankfully, this tour was a great highlight and chance to fill down time in a super fun and special way. 

2. We paid a visit to Sweet Cheeks Diaper Bank today. I had the pleasure of meeting Megan Fischer, CEO and Founder, virtually a few weeks ago at work to discuss their visit to HappyBottoms soon (we love our friendship with Sweet Cheeks) and I couldn't wait to meet her in person while we were in town. It was wonderful being able to take a tour and see the amazing work they are doing and meet the rest of the team. The boys loved seeing another diaper bank after being at HappyBottoms and seeing our warehouse. Fun to see similarities and differences. It is crazy to realize how life has come full circle in my professional life. I've stopped and thought about it alot on this trip actually. The whole reason I moved to non profit work is because of our experiences with P's medical journey. I believe God had his hand in my change of heart years ago every step of the way. So rewarding to watch it unfold all these years later. Took me awhile but I have never felt more sure of the work I do and love who I get to do it with on a daily basis. 

Once we got back home and boys played video games to chill, I received our anticipated call from radiology. They can squeeze P in on Friday at 12noon for a CT scan. We planned to drive home early Friday morning and head straight home to have the weekend to unpack and get ready for next week but our plans for going home have now changed. We aren’t sure what that looks like yet. Most likely arriving home Saturday but still not sure. I have mixed feelings. I am so glad we could get this ct scan done to know what exact direction needs to be taken for his vocal cord situation. I am also bummed because Tim and I are exhausted and we haven’t even conquered procedure day yet (tomorrow) not to mention we are very eager to sleep in our own beds and relax a bit before a busy week starts. 

A few random thoughts and highlights:

• Preston is sporting some new Cincy shirts he received and loving it! Snapped a photo at breakfast of him. 
• While Preston was very much highlighted at the stadium today, Reid said “Preston is the one going through all of the surgery stuff so he deserved it” Reid also knows he gets to have both Sporting scarves now since P has a new FC Cincy one! Ha!
• Reid loves the FC Cincy jersey he was gifted today 
• We have a package arriving tomorrow from a friend- yay! I can’t reiterate enough the thoughtfulness we have received from so many that makes this journey so much lighter. Truly! 
• I signed up for a knitting class tomorrow night at 7pm with Preston. I am so excited to learn with him! Jury is out if he actually shows up with me LOL 
• McDonalds coffee is so good 
• The built in white noise machine in our bedroom is game changing. RMH really has some magical touches that ease hard moments.
• My boys are less than thrilled washing every dish we use by hand after breakfast or snacks and they haven’t complained once because I would murder them if even an ounce of complaint slipped out. We are SO blessed to be here and be on the receiving end of so many wonderful things to make this journey more tolerable. Doing dishes is the least we can do. How do I continue this situation at home? :) :)
• The new gaming room is so great! It will be a life saver for Preston tomorrow morning to distract him from no food or drink starting at 9am. We check in at the hospital at 12noon. I will be posting O.R. time once I know and any updates on my fb page. Check there tomorrow. I won't be updating the blog during the day.               
• I had a few pep talks with myself today once I heard from Radiology. I know we will get through whatever comes our way in the next day or two. Being together is what matters most. 
• Having friends tell you "It's OK to feel the way you do" really helps :) 

We will take any prayer you have to spare for good news tomorrow. I asked Tim how he is feeling and he said "I am nervous. Expecting the worst and hoping for the best." I am right there with him! God is in control and we are continuing to do our very best and lean on Him. Thanks friends for being with us on this journey! It's always comforting to know we are never alone. 

We stopped for Graeters ice cream again today! It never gets old and we have a new friends at our favorite location. We plan to stop in and say bye to Sharon and Don before we leave. :)
Thank you so much for the treat today, Wiles Family. 

Boys love her branding 🐖

They even game in a twinning position