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.