When we brought Rhett home from the NICU, we knew we were leaving with at least one other surgery in our future. Since then, I have been researching A LOT. I have researched the best hospitals, the best surgeons, and the most successful surgical procedures for the type of surgery he needs. I have also spent time making connections with other families who have children with CHARGE syndrome, and I have taken note on their experiences with the Choanal Atresia surgery that Rhett is going to have. More importantly, I have prayed. I have prayed that God will lead us to the hospital and the surgeons that Rhett needs. I have prayed that He will lead my decision making when it comes to the doctors caring for Rhett. I have prayed for patience so that I may wait for the right opportunity we need. And I have prayed that I can hear God telling me where to go and what to do.
Through all my research, I was able to find that Cincinnati Children’s Hospital has a team of doctors that specialize in CHARGE syndrome. After talking to several moms, and a lot of prayer, I felt like this was something I needed to further look into. I finally decided to call Cincinnati in April to see if I could get the ball rolling on having Rhett seen by their team of doctors. The doctors have a monthly meeting to discuss new patients, and when they discussed Rhett in May, they felt that we would benefit from being seen by their Aerodigestive Center. Since May, I have been doing everything I can to get us on the schedule. It was a long process of phone calls, emails, and paperwork. There was a lot of waiting because insurance needed to approve us to go to this out of state visit. Everything was finally submitted at the beginning of July, and after that it was a waiting game.
On August 9th, I got the phone call saying that insurance approved us to go for this trip. We are so excited to go for Rhett’s initial visit in October. We will spend the week of October 9th in Cincinnati where Rhett will have different appointments, tests, and scopes done. We are hoping that this trip will let us know if he has any other airway issues that we currently do not know about. As I said before, sometimes you do not know everything that could be wrong as a newborn. In some cases, you find more problems as the child grows. I am also hoping to make a plan for Rhett’s surgery during this trip.
I wanted to say thank you to everyone who has kept my sweet boy in your prayers. I also want to thank those of you who have prayed with us about going to Cincinnati. We feel your prayers everyday, and we are so blessed to have such a loving support system from our friends and family.
As we prepare for this trip over the next two months, I want to ask for continued prayers. Please pray that we find nothing else wrong, but if we do, pray for peace as we continue to trust God with Rhett’s life. Pray that this trip will give us the answers we need, and that we find the surgeon we want operating on our son. Also, continue to pray for us as a family because having a child that needs surgery is a very scary thing.
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
6 thoughts on “Our Next Adventure”
You got this! Love you!
Thank you! Love you too!
Will be praying
So happy that all of your hard work is going to get you to Cincinnati. Rhett is so handsome ! I will pray for your family. You are in my thoughts, Susan Welch