Update on Ears ~ Sept 2014

When I last wrote, I explained that Thomas' left ear was rejecting the tube and causing quite some drainage, pain and discomfort.  The tube only lasted 6 months before it started doing this and these were the special U-tubes that were suppose to be able to last up to three years and do not come out on their own.  (Side note, Thomas has never been able to expel a tube on his own without having surgery to remove it)

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!!

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

Them ears, them ears!!

So, we've been trucking along for a while with mild issues.  Yay!!  Just a little back history, the first thing that we ever knew was wrong with Thomas was with his ears.  He failed his newborn screening which at the time seemed like a normal occurrence and that it was fluid that would drain.  Well, that was not the case, he failed every hearing test thereafter.  At the age of 5 months old he had his first surgery to insert tubes into his ears.  Amazingly this was what he needed to give my baby his hearing.  It could not be determined if it was do to pressure or fluid, but his ears were not able to release either from behind his ear drum clogging his hearing.  Due to his hearing loss, he was mildly delayed. 

About a year later his tubes were being pushed out of his ear drums and his hearing began to fail again.  We underwent surgery again where they removed them both and replaced them with new tubes.  Once again, his hearing was restored and with speech therapy we quickly overcame.  His second set of tubes worked for a while and then again we had one ear that began pushing the tube out but had tissue still connecting it.  The ENT thought it was sitting in the canal and took it out in the office, which he now regrets.  The tube was indeed attached to additional tissue in the ear and caused great pain to Thomas and quite a bit of blood.  The ENT will never forget this day and I won't either, however, Thomas doesn't seem to hold a grudge surprisingly.  Unlike other kids, his tubes don't fall out on their own and his tubes are not due to ear infections.  Our ENT is full aware of Thomas' condition and even confirmed to me today that even though we are able to temporarily fix his hearing today with this method that he may still loose his hearing due to sensorineural hearing loss.  I appreciated his honesty and was glad that he was aware that this may happen but that we will cross that bridge if and when we get there.  Right now we need to focus on his ears at this time.

Here is what we had the other day with Thomas' ear.

He was complaining the night before about his ear hurting and I gave him some pain meds to help.  The next morning when he woke up, this is what we had.  Luckily, I was able to take this picture with me today to the ENT and he was able to see.  This is not the first time I have seen this with Thomas but I honestly wasn't sure if this is what his ears are suppose to do or not. 

The ENT examined his ear today and saw granulated tissue around the U tube that was placed in his ear December 2013.  He said this can happen but usually not this early as the tubes haven't made it a year yet and I know for a fact his ear looked like this in early June.  He explained that the ear drum is rejecting the tube, it is the body's way of extracting a foreign object.  His ear has blood and wax all up in it as part of the reaction.  The easiest, most invasive way to fix this at this point is to add medication in hopes the ear drum will change its mind in a more condusive environment.  He asked if I had tried the drops and I explained that the Ciprodex drops that they always give me set the child on fire.  He asked if he could try and I said sure.  So, the ENT got the drops and put it in his sweet ear.  He was able to see first hand that those drops are very painful to Thomas and his ears are super, sensitive.  The doctor ended up calling me in a different set of drops to try that have a better buffer than these.  We are going to try the drops and pray that his ear drum will change its mind on the tube.  We will go back for a follow up in three weeks.

The other option, if the drops do not work, is for Thomas to go under again and have this tube removed and replaced with another one.  While I would prefer not to go through this again, we will do what we have too to make sure he has the best quality of life.  I have always felt that with all he has going against him that at least the ears is something that can be corrected.

Pray the drops will heal the ear drum and restore his ear to a good, healthy environment that will work with the tube.  Pray the new drops are not painful to Thomas so that we can continue this method without the stress and pain associated with it.  Thank you so much, for all of the love and support always.

The righteous cry out, and the LORD hears them; he delivers them from all their troubles.  Psalms 34:17