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 

Day of appointments in the books!

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 cooked us breakfast. Tim did a fun time lapse on our walk to appointments at Cincy Childrens that I shared on social media. We checked in and another photo from P's chart was a blast from the past. SO LITTLE and no teeth. LOL 

I want to explain why we are here. It's two fold. Preston needs his vocal cords checked and to make sure he isn't aspirating when he drinks and eats. He had been sick most of the winter with a cough we had never heard before that landed us at his pediatrician more times than I care to admit and eventually requiring heavy duty drugs used for CF patients. His Dr ended up talking to his airway team and everyone agreed we needed to come out here. We also noticed a huge difference in his lung capacity. He had to give up playing his instrument for this very reason. He couldn't move enough air through his airway to play it sufficiently. While he moved on to purcussion and loves it, it was heart breaking to see him cry tears of frustration telling us how much joy playing his instrument brought him. We were determined to get some answers on all fronts.

First up, good news. Preston passed his swallow study with flying colors. Next up was FEES and this gave us a good look at his vocal cords and some good information. We have noticed as Preston has grown, his voice does not carry well. He gets lost in a loud environment. The doctor asked for examples and we said restaurants are really hard and especially when he tries to order for himself. The waiter can barely hear him. Reid instantly piped up and said, "Also, it's hard to hear him in the cafeteria at lunch." It made me realize Reid has insight Tim and I would never have. He was so happy to give input and help. Preston agreed. I included a picture of his vocal cords. Sorry if it isn't pleasing. Its a very accurate picture of the Doctors findings. He saw 'scalloping' as a result of intubation (almost like scarring but different) and it can cause some of the vocal struggles (projecting etc) and didn't see any 'leaks' which is good. What does this mean? We will start voice therapy when we return home. I am on the hunt for someone great. Anybody have any recommendations or referrals?? Message me! Possible vocal cord surgery after he is done going through puberty. This was not even an option in my mind nor did I know about this kind of surgery. I have been so worried about another airway surgery that this took us back a bit. If we do the surgery too soon, the area could require surgery again after more growth occurs. They are adding a CT scan to our list of appointments and hope we can squeeze this in before we leave. Waiting to hear from radiology. 

Lastly, Preston had a PFT -pulmonary function test. It tells us how well his lungs work (inhale, exhale, force, duration, and capacity). Reid and I sat in the waiting room together for that test as only one parent could go back. Reid told me he feels bad for P and realizes how hard this can be. He was beyond patient. We met with his Pulmonogist after that for a clinic appt (he will be in the O.R. Thursday to join Preston's ENT for the scope procedure). It was nice to talk about our concerns and he will share the findings of the PFT with us then. We waited an hour and 30 min for the clinic appt which took 15 minutes. Again, the boys are troopers and we have had some great laughs while all being together in one tiny room throughout the day. 

We stopped by Graeters for a treat after a long day and now settling in to watch a movie in our room. We have a few things tomorrow but will be laying low in preparation for Thursday. Now that we have been here for 24 hours, the boys are keenly aware of others struggles and the conversations it is creating are beautiful, hard, and eye opening. I am proud of their empathy and understanding. 

I will keep the blog updated once I find out O.R. time for Thursday! I hope everyone is having a great start to their week. The weather here is beautiful. Soaking up the sunshine when we can and just grateful to all be together. I took a photo of my favorite staircase that leads to our room. Tim was sweet enough to jump in the photo. Those stairs have heard alot of my phone conversations over the past decade when I needed a place to just sit and talk solo. Wanted to capture that pic for memories. 

Preston and Reid heard every conversation that took place today. Preston had so many people surrounding him and poking and prodding him all day and he never complained once. We got to our first appt at 8:45a and got home at 4p. There was only one time today when vocal cord surgery was mentioned, I noticed Preston become unsure but when we left for our walk back home, he said "I think today went pretty well, do you guys think so too?" He is my inpiration! May we all have that outlook and attitude amidst the hard. 

Thank you to everyone who checked on us today and continue to lift us up! We feel it. 

 

Journey to Cincy

 We left Sunday. As we hopped on the highway, Tim said "I can't believe I am doing this drive again." I agreed. We are in this together thankfully. Tim has done this drive many times solo and I knew I needed to join him and be there for Preston and thankfully, Reid decided to come too! We arrived in Terra Haute, IN for the night. We had a great stay with swimming, hot tub, dinner at Texas Roadhouse and a delicious breakfast to send us on our way to Cincy today. We arrived with a stop to Graeters first of course. Their new flavor was like a personal WELCOME straight to my heart LOL I am glad we have this treat to always look forward to. We pulled up to the Ronald McDonald House and couldn't believe the renovations and size of this new home. WOW! It's stunning. The warm welcome is always appreciated. And yet, I had a lump in my throat. I saw the photo of how little Preston was the last time we stayed here at check-in today and it made me realize how much he has changed but also how much in our life has changed. We have already done a load of laundry and the boys have each built a lego set and we have our room all set up for the week. Tomorrow is a long day with 4 clinic appointments (FEES, Voice study, Pulmonary function test, and Pulmonology appt). I will update how those go once we find out. We will be there all morning and then be able to walk back to the RMH for lunch before heading back to the hospital for the afternoon appts. Just another perk of the RMH being right across the street from Childrens. Thursday is the biggest day with his O.R. procedure. We got the pre-op instructions today with a check in time for 12noon but no exact O.R. time yet. Stay tuned on that. We have friends wanting to set alarms to pray so I will be sure to let you all know. I am so hopeful for a simple fix which would honestly be miracle news......I don't know what that would look like but we need a solution to Preston's issues and a full airway surgery could also be that solution and I know what that entails and I can't even go there right now. So for now, Tim and I stay hopeful. I have never prayed so hard in my life. 

Lastly, out of 177 rooms, we were placed in the exact same room I stayed in when my dad and I brought P here for his 2nd airway surgery. Really took me back and I was filled with a cocktail of emotions. We ate dinner with families who are all here for the same reason....to get their child the care they need. Most are displaced too. There is peace to be found in that kind of solidarity and yet none of us wish to be here. Such a weird place to be and we have no choice to accept it and carry on. We ended the night with delivering the goodie bags and it filled all of us up knowing everyone would have something special in their mailbox. Just like when we first came here and experienced the same thing. Feels good to spread joy! Special thank you to my friend, Jamie Freedlund, for continuing to have an impact on me with that kind of mindset. I am really digging deep these days to spread and find joy in every step of this journey. 

I just want to take a minute and say what an incredible 'big' brother Reid is to P. He wasn't sure he was going to come with us. We left it totally up to him. He loves being at school and with his friends so much and he is my routine oriented kiddo. I wish everyone could see the role he is playing on this trip for P. He got out of the pool at the hotel and was all excited to show me his hair styled wet and I took a hard look at him and realized just how grown up he has become and what a strong rock he is for P. He is the child that always challenges me and can be hard headed but he has a soft spot most dont see and he really has been worried about Preston. Especially with all the issues Preston encountered this winter. Reid has been in the shadow many times the past 12 years and Tim and I fight for him any chance we get so he can be equally apart of this story. His role matters and we want him to know that. It was hard to realize this early on but with time and therapy, Tim and I are more aware of this than ever before. My love for him is a different protective kind of love than what I have for P. I believe all parents love their children in different ways. It's hard to describe. He has witnessed alot of hard things and I am so happy he came with us. He told me tonight, "I am so glad I came mom!" It's wonderful Reid will experience RMH with it being such an important and impactful place. 

Lastly, I will never stop saying THANK YOU to everyone who is loving us from afar and has lifted us up prior to leaving. Every text, call, IG message, fb message, gift, food, help with the goodie bags and venmos have added tremendous light to our path more than you know. We are grateful!!! 

I encourage anyone who wants to see how amazing this place is to download the app and take a virtual tour. It's crazy! 

"The best medicine for despair is service" - Gordon B. Hinkley