At the beginning of February we made another trip to Cincinnati to have a scope of Rhett’s nose, and to follow up with some of his doctors that we haven’t seen since October. While we were there we received some excellent news. Rhett’s airway in his nose has stayed open! This surgery has been ruled as a success, and we will no longer need follow up scopes for his nose. This was the first trip to Cincinnati that Rhett has not needed to go under anesthesia or to the OR, which was another blessing. We are now in a place where we will get to begin working on getting the trach removed. Thank you to everyone who has prayed for Rhett through all of this. God continues to answer our prayers, and we could not be more thankful for our team of prayer warriors.
While we were there, we were hoping to start the process of weaning Rhett from using the trach to breathe. In order to do that, he would need to tolerate wearing a speaking valve. The speaking valve requires him to inhale through his trach and exhale through his nose and mouth. He currently wears a speaking valve with two little drill holes in the side. Since some air will come out through the drill holes, they help to relieve some of the pressure needed to breathe out using his upper airway. We were hoping that he would be able to tolerate a speaking valve with one drill hole, but unfortunately he was not able to because he was working too hard to breathe with it on. He has been wearing the speaking valve with two holes in it since October, so he should have been able to tolerate moving to the one hole valve. This is our indication that the collapse in his subglottis (a narrowing in his airway right above the trach and below the vocal cords) we found through his scopes in October will be a problem for his breathing. When we found the collapse we knew that it could cause a problem, and it would need to be monitored. We were really hoping that his narrowing would widen as he grows, but that does not seem to be the case. Since the collapse will prevent him from getting air in and out appropriately, he will require another airway surgery before he is able to have his trach removed.
We are now in the process of planning another trip to Cincinnati for more scopes, tests, and his next airway surgery. We will most likely be in Cincinnati for the entire month of May. Rhett will have another scope of his airway done on May 4th by his ENT and Pulmonary doctor. During that scope they will check out his airway again, take cultures to make sure there is nothing that will affect the healing process after surgery, and make sure they have their surgical plan in place. On May 8th he will have a FEES swallow study. He has had several swallow studies done already, but this one will be a little different. Instead of doing the swallow study as an x-ray, he will have a camera go through his nose and stop above his vocal cords. This type of swallow study will allow the doctors to get a really good look at his anatomy, and they will be able to make a pretty good prediction as to whether or not widening Rhett’s airway will cause him to aspirate. On May 10th Rhett will have his 4th surgery which will be a Single Stage Laryngotracheal Reconstruction (LTR). This surgery will be the most intense surgery that he has had so far. The surgeons will take a rib graft in order to widen his trachea where he has the collapse in his subglottis. After the surgery is over, he will have to stay in the hospital for several weeks. He will have his trach removed during the surgery, and will have a breathing tube that goes through his nose in its place. The breathing tube will act as a stent while his airway heals. He will have the breathing tube and be sedated for about a week after the surgery, and then he will go back to the OR for a scope to check on how he is healing. During this scope they will most likely remove the breathing tube. He will continue to stay inpatient at the hospital for about another week while they monitor his breathing. Hopefully he will be discharged from the hospital after 2 weeks, and then we will stay local at least one more week before heading home. He will have another scope of his airway to again check on healing and to do any dilations if necessary before we head back home.
We are once again asking for prayers. Please pray that his scope and swallow study come back with good results. Also pray that everything will go as planned for this surgery to happen. Please pray for the surgeons as they work on Rhett, and that his surgery will be a success with a quick and easy recovery. Please pray for safety as the trach will be removed. The thought of the trach being removed is so exciting, yet so terrifying at the same time. This has been his airway for his whole life, so the thought of no longer having it scares me just a little bit. Pray for safety as we travel, and also for my nerves. Even though we have handed Rhett over to the hands of surgeons several times, it does not get any easier on me. We ask that you will also pray for our whole family because it will be extremely hard being so far away for such a long time. Dale will most likely be back and forth for work, but thankfully we have wonderful family support and will have several family members with us throughout our time in Cincinnati.
Thank you again to all our prayer warriors. Thank you to our friends and family who have supported us constantly with our decision to travel to Cincinnati where he is receiving excellent care. Thank you to everyone who is following our journey. Rhett is doing new things every single day, and I can’t wait to share with all of you the progress he will continue to make.
Proverbs 3:6 In all your ways acknowledge Him, and He shall direct your paths.
Luke 1:49 for he who is mighty has done great things for me, and holy is his name.
Psalm 96:3 Declare his glory among the nations, his marvelous works among all the peoples!