I have been meaning to update a blog post for weeks now, but it is so hard to find the time when you are chasing a wild 2 1/2 year old around! Rhett has a lot of things going on in the next few weeks and months, and we are really excited about it all.
First I will start with what is going on in July. We will be traveling back to Cincinnati next week, the week of July 16th. This trip will consist of a chest x-ray and clinic appointment with his pulmonary doctor on Tuesday the 17th, and then more scopes of his airway on Wednesday the 18th. He will be scoped again by both Pulmonary and ENT to check and see if the inflammation we have been battling is gone or at least getting better. Rhett has had inflammation in his airway since last June. We first realized the inflammation when he was being scoped to prepare for the LTR (trachea reconstruction surgery) last June when we had a change of plans to remove tonsils. He was scoped last August where we found the inflammation was still present, so we began a Monday, Wednesday, Friday dose of medicine to try to help the inflammation go away. We scoped again last November where we saw that the inflammation was still there. We continued the Monday, Wednesday, Friday medicine, and added in both Flovent and Flonase. Now it is 8 months later and we are going in to check on it again. I am hoping and praying that all these medicines have helped. It would be awesome news to hear that the inflammation is completely gone, but I am at least hoping that his airway is looking better. If the inflammation is gone, we will then discuss and schedule the LTR. The LTR is the major airway surgery we are waiting on so that Rhett’s trachea can be reconstructed and the trach can be removed. I am so ready to have this surgery behind us, not only because I want the trach out, but mainly because it is so stressful to know that there is a major surgery that Rhett will have to endure at some point in his life. I would really like it to be done while he is still young so that he will hopefully not remember the pain that I know he will be in after the surgery.
Now onto what is coming up for Rhett in a few months. We have been approved by insurance for the Cochlear Implant in his left ear, and finally scheduled the surgery for Rhett. We were really hoping to get the surgery done this summer, but the surgeon was booked through August. These surgeons are so wonderful that everyone wants them to do their child’s surgery, so the booked up schedule was not surprising. Rhett is scheduled to have the CI surgery on the left ear September 26th. This will be about a 4 hour surgery, and then he will spend one night in the hospital. After that we will come home, allow Rhett to heal, and then go back to Cincinnati about a month later to have a post op appointment and the implant activated. Once he has been activated and had several mappings to make sure the implant is at the correct settings, we will be followed by an audiologist at Baptist. We are not sure how much hearing the implant will give Rhett, but we want him to have every opportunity possible. I am hoping he will at least have sound awareness in the left ear, but hopefully more! This will be perfect timing for him to have the implant done with preschool starting in January.
Now these are the plans as of now. Plans are always subject to change, and a big part of me is hoping that they do. What I mean is that if we learn that Rhett’s inflammation in his airway is gone and they are ready to schedule the LTR surgery, then we will do that surgery first. That might mean we have to push the CI surgery back. So a lot depends on what they tell us next week after his scopes.
As always, I want to thank you for following along with our journey and praying for Rhett and our family. Here are some prayer requests that I ask for you to remember next week as we travel to Cincinnati. Please pray that the inflammation in his airway is gone or at least looking better. Please pray that Rhett handles anesthesia well like he always does. Pray that his lungs look clear on the chest x-ray. Pray for Dale and I as these appointments are always super stressful for us. Pray that no matter what news we hear from the doctors, that we remember God is in control and His plan is perfect. Pray for safe travels and a smooth car ride. Thanks again for loving us and loving this sweet child. Through all he has been through, I have never met a happier child. Rhett is such a blessing, and I hope he blesses your life as you read about his journey just as he has blessed our life.