A few weeks ago, we had another trip to Cincinnati for another round of scopes and a FEES swallow study. I apologize for the delay in updating. We have been super busy with appointments, therapies, and getting back on schedule now that Dale is back to work. I also needed to take the time to process and accept the information we received from this trip because it was not the results we were hoping for.
Before leaving for this trip, I really had a good feeling we were going to get the go ahead for planning Rhett’s airway reconstruction. Since having his tonsils removed in June, things have been going really great. The suctioning and vomiting have decreased significantly, except for the few weeks that Rhett had pneumonia at the end of July. Even though I had a good feeling about how this trip would go, I still always prepare for the news that I do not want to hear. I try my best not to ever get my hopes up too high about things, so that I won’t be too disappointed when things don’t go the way I am hoping for.
With that being said, we did not get the news we wanted to hear, and we are still not at a place to plan his reconstruction surgery. I feel like we have just entered a waiting game, and I honestly do not know a timeline for when he will be able to have the surgery and get the trach removed. His scopes showed that he still has inflammation in his airway around his voice box. He will not be ready to have the big surgery until that goes away. We are unsure as to why he is still inflamed in his airway. We were hoping that when his tonsils were removed in June, that the inflammation would go away once he was healed. He will be taking an antibiotic for the next three months in hopes that the inflammation will clear up when we return to Cincinnati for another scope in November. We were told that this antibiotic only works on half of the children it is prescribed to, so the chances of the inflammation clearing up with this medicine are 50/50. If it doesn’t work, we will have to continue to wait for it to heal on its own. Please join us in praying that this antibiotic helps take the inflammation away when Rhett is scoped again in three months.
Rhett also had the FEES swallow study done this trip. This was the procedure that I was dreading the most, and it proved to be just as awful as I had anticipated. For this test, Rhett had to have a camera put through his nose until it reached above his vocal cords. The ENT wanted this type of swallow study done so that they could get a good idea of what his anatomy looked like when swallowing. It took me, Dale, and the nurse holding him down for this procedure, and he cried the entire time. It was traumatizing for us all. Rhett was so upset that we could not even get him to eat, but the ENT was able to get an okay look at his anatomy. He could see that Rhett has a lot of secretions that we still need to get under control. The plan is to try botox injections the next time he is under anesthesia when he is scoped again in three months. Please pray that the botox will help with his secretion management.
While the news we received was a little disappointing, we were able to learn some valuable information. Rhett is just not ready to have this surgery and get the trach removed right now, and that is okay. If I have learned anything through this journey, it is that Rhett is in CHARGE, and he will get there in his own time. The important thing is that Rhett is happy and thriving in so many ways. Although Rhett can’t talk, and I want more than anything to hear his sweet voice, he is able to communicate his wants and needs through signs. He is also improving tremendously with eating orally, although it is an extremely slow process. He is working on walking, and does great in his mini pacer walker that we were given by his wonderful physical therapist. He is very mobile with crawling, and he will pull to stand on anything and everything. It is important to remember the blessings we have been given among our disappointments. We have been blessed in so many ways, and I thank God for that. Right now I just need to remember to be patient. Rhett is doing wonderful things, and will continue to do amazing things in his own time. It is truly amazing how such a little human can teach you so many big and important lessons.
Thank you so much for your continued prayers, and for following along with our journey. Please keep the prayers coming as we prepare for his next round of scopes in a few months.
Rejoice in hope, be patient in tribulation, be constant in prayer.