1 Thessalonians 5:18
Give thanks in everything, for this is God’s will for you in Christ Jesus.
I want to begin this post by reflecting on all the blessings we have been given this Thanksgiving season. I am so thankful that we have a happy boy who remains happy despite all of the challenges and procedures he has to endure. I am so thankful for my husband, who is so hands on with Rhett and all of his care. I know I hit the jackpot with him. I am so thankful for a supportive family who are ready to help out in any way possible. I am so thankful for my in-laws as they have traveled every trip to Cincinnati with us, which has been extremely helpful. I am so thankful for all the doctors and nurses at Cincinnati who truly know my child, and the complexities of CHARGE. I am also thankful for how I can easily communicate with them and they are so quick to respond.
As most of you know, we traveled our 9th trip to Cincinnati this past week. Spending holidays in Cincinnati seems to be a tradition in the making. Last year at this time, Rhett had his Choanal Atresia surgery to open up the airway in his nose. It is amazing how quickly a year can go by. Rhett had scopes done on Wednesday to check on the swelling in his airway, and also to see how his nose looks. Rhett’s nose looked great during the scopes. Normally whenever he is under anesthesia, his ENT will do a dilation to his nose to stretch and keep the opening where she wants it to be. This time she was happy with the size of the opening, and he did not need any sort of dilation. I am so thankful that his nose is staying exactly how it needs to be.
Unfortunately, we did not get the news we were hoping and praying for. When they checked on the swelling around his vocal cords, it actually looked worse than it did in August. Leave it to Rhett to throw everyone for a loop. There is really no explanation for the swelling, but the ENT and I highly suspect it is from his frequent vomit episodes. Several weeks ago Rhett had the stomach bug, and I’m sure that did not help his airway. The good news is that Rhett has not thrown up in over two weeks. This is truly an answered prayer. About a month ago he began an inhaled steroid breathing treatment through the trach, and I believe this new medicine has somehow helped him to not throw up. Our current plan is to continue the antibiotic he has been on since August, continue the inhaled steroid, and we are going to add in Flonase nasal spray to see if that can reach the inflammation through his nose. We are going to give him a longer amount of time on these medicines before he is scoped again. The plan is to do another scope in 6-9 months, which means we won’t have another trip to Cincinnati until the summer. That will work out really well with Dale’s work schedule. I believe we will coordinate the next scope with doing Rhett’s Cochlear Implant surgery on his left ear. We will probably also coordinate some other appointments for that trip. It is sort of nice to know that we will be home for a while before going back to Cincinnati.
The news we received means that Rhett will have the trach for longer. Yes, we are ready to experience life without the trach, but the trach is actually a huge blessing right now. It is very common for CHARGErs to have complex airways, and for their airways to do things that no one can truly understand. Basically, the doctors expect that his airway would look like it does, even if he did not have the trach right now. If Rhett did not have the trach as his secure airway, he would be in some serious trouble. The swelling would be obstructing his airway, and he would be struggling to breathe. I thank God for the trach so that Rhett does not have to experience the struggle of breathing. Looking back to June when we had planned on doing Rhett’s big airway surgery, I thank God for those huge tonsils. If we didn’t have a reason to stop us from moving forward with that surgery, we would have probably have to put the trach back in right now. That is one of my biggest fears, and something I do not want to happen to Rhett. When he is finally ready for the trach to come out, I want it to be for forever.
Although we may feel some disappointment with the news we received, we have to remember how blessed we truly are. Rhett is here with us. He is happy, growing, and thriving, and it is all because he has the trach. If he did not have the trach he would not be walking and active, he would not be able to eat any sort of amount of food by mouth, and he would not be the happy boy we all know. Instead of struggling to breathe, he is able to live life fully.
God’s plan is ALWAYS better than our own. I know that, and will continue to trust in that. One of the things that makes me the most sad about the trach is that it takes away Rhett’s ability to vocalize. In the last few months, Rhett has learned to make grunting sounds around the trach, and we can hear him cry if he cries really hard. On our way home from our trip, Rhett made an actual vocal sound for the first time ever. He has been almost babbling randomly these last couple days, and we even heard him laugh for the first time ever thanks to his cousin Collin being so funny. Hearing your baby’s voice has got to be one of the sweetest sounds ever. I have waited so long to hear it. That was definitely a Thanksgiving blessing, and I think it was God’s way of reassuring me that everything will work out when the time is right. Rhett will have this surgery and get the trach out when he is ready. God is in control, and even the roadblocks in our plan are blessings in disguise. These roadblocks are just directing our paths to end up at the right destination.
We always thank you for your prayers, love, and support. We ask that you will continue to pray for Rhett and our family through this journey we are on. Please continue to pray for healing over Rhett’s airway. Pray that Rhett will continue to not have any vomiting episodes. Pray that we can feel peace and patience as we wait for the timing to be right for planning Rhett’s big airway surgery. Thank you again for following along with us, and Happy Thanksgiving to everyone!