the amazing adventures of carson and kellen: We are home!

Thursday, June 11, 2015

We are home!

We made it home after a long two days! Carson was a trooper throughout the trip and of course got a lot of compliments on how well he was doing! We got home Wednesday night around 9 pm. You would never know Carson had a surgery by the way he was playing that night or today. He continues to amaze me and his smile and pure joy bring so much happiness to our lives! Carson and Kellen were so excited to be reunited...and the hug they gave each other when we got home was absolutely priceless! I wish I had gotten a picture of them.

Our clinic appointments went well. After a short delay before surgery Wednesday, it was Carson's turn. The procedure was actually pretty quick (maybe 30-40 minutes). We did get several questions answered. Although there was no miraculous healing (at least at this time). They did tell us that his airway looks about the same as it has the past two years but has grown proportionally to his overall size. He still has multiple areas of obstruction above his trach but because it has remained the same, they are ready to go forward with planning a reconstructive surgery, likely for early this fall! And Dr. Cotton (ENT) said there is a 'good' chance he will have his trach out within a year. This is news we have been waiting to hear for several years!

However, when we left the consultation room after Carson's surgery was finished, I can't say I only felt joy. I felt some fear and worry about what the next several months will hold for Carson. The first thing that caught me off guard was when the pulmonologist's first words in the consultation room were "there is a chance he may not get his trach out..." Of course, I had to ask the first thing that came to my mind, "Ever?" and the doctor said yes. That stopped me in my tracks because we have never heard that from this group of doctors. But even as I started to panic, I 'heard' the words "Be still. I AM alive. All is well." As I calmed my heart (repeating those words over and over) and the doctors continued their explanations, I think he only meant that Carson's airway is not a 'slam dunk' case. There are SO many variables that factor into the success of the surgery and eventual decannulation (removing his trach) and there will likely be SEVERAL surgeries that must take place prior to removing his trach. Some will cause a significant amount of pain and discomfort and require longer hospital stays. And every child responds differently to the grafting, the stents, and healing of the surgical sites. I hate the unfairness of all this, that Carson has to go through so much suffering, yet I have to continue to bring my mind back to the present and realize that we will take it as it comes, that God will provide moment by moment, day by day, and I truly believe we will eventually reach that end prize of NO TRACH! We were also reminded that we are truly in the best place for airway reconstructions. Cincinnati Children's are the world LEADERS for airway reconstructions, and in recent U.S. News and World Reports, they were ranked #3 for Best Overall Children's Hospitals.

We will continue to pray for healing, for all the details (many of which I can't even name), and for the surgeons that will care for Carson in the coming months. We have not yet scheduled an actual date but I'm hoping to begin in September. The first stage will take place over roughly a two month period (much of which we will be able to return home for). Thank you again to all of you that walk along this journey with us. God is truly good and we will continue to claim His promises! HE is with us and for us! And as my little cousin learned in VBS the very day of Carson's surgery. "God has the power to heal!"