We saw our ENT and he recommended using the drops in an effort to create a happy environment in hopes the eardrum would keep the tube. I explained that the normal, Ciprodex drops, cause quite a bit of pain to Thomas and wouldn't work. He offered us an alternative prescription for Neomyc-Polym-Dexameth drops. Thomas was able to tolerate these for only a couple of days and then they were causing great pain and discomfort to him where it took him over 45 minutes for him to recover. It was awful to see. I called the ENT and they advised for us to immediately stop the drops and hold tight until our follow up appointment on the 24th. In our discussion, it truly sounds like our only option is surgery to replace the U-tube with another U-tube.
In sharing my story with others, I was lucky to have a fellow special needs mom reach out to me. Her first words to me were, "If he were my son." followed by a suggested doctor that we should go see if we were interested in getting another opinion from someone who may have the experience to give us some alternative options. I took her advice and reached out to the doctor. It took me a couple of days to compose my email and even went through some of my own revelations in composing it. I sent the email this morning and I had a reply within the hour!!! I couldn't believe it. Then we were emailing back and forth. What?!?! Amazing!! He agreed that it sounded like with his Eustachian tube dysfunction that tubes would probably go through several set of tubes before he would be done. He also said what I have been saying, which is with everything he has against him he needs as much as possible on his side. Yippee!!
While it sounds like repeated tubes probably are a large part of his life at the moment. He suggested that if I would like a high quality second opinion, I should see Dan Choo. Dan is the Chief of our Division, and is also one of the most experienced and respected pediatric otolgists in the country. I was more than happy to take the referral and we got the ball rolling and should hear something later this week. If indeed, he agrees that repeated tubes are the only option for Thomas at this time then I will settle this matter and accept it. But if there is a slim chance that we can save his eardrums from this trauma, repeated surgeries and rounds of drops, drainage and pain then I will try. Peace of mind will be worth the trip to Cincinnati.
I, of course, did my research on Dr. Choo and am thoroughly impressed. Not only is his interest in the inner ear but he also specializes in head and neck surgery, which means he may be familiar with KFS and how it could effect the ear structure ect. Here are his special interest:
Clinical Interests
Diagnosis and management of children with hearing loss; pediatric cochlear implantation; surgery for congenital ear abnormalities; hearing restoration surgery; disorders of the endolymphatic system of the inner ear (e.g., Meniere's Disease).While most say that his other issues are not related to his ears, my mama gut tells me otherwise. His eyes were effected, his muscle tone is effected, his bones are abnormal from top to bottom of his spine and you his ears are just a coincidence.
Thank you for all of the love, prayers and support!! It is amazing to have so many people cheering on our team!!
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| Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain. 1 Cor 15:58 |
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