Sunday, March 16, 2014

An Ian update...discovering hearing loss and where we go from here

Our gorgeous little Ian turned 5 last month.  I took him to the ENT on his birthday.  He got tubes placed in his ears 3 years ago, and although both had come out of the eardrums, one was still stuck in the ear canal.

In December, Ian had asked to listen to music on my Kindle.  Lauren got it set up with his favorite songs and earphones.  Our earphones were broken.  Only one side worked.  She placed them on his ears and he told her he couldn't hear it, and asked her to turn it on.  She put them back on her ears, and told him that they were working fine.  She placed them back on his ears, and he said he couldn't hear the music. She took them off again, listened, and then placed them back on his ears, but switched the working side to his left ear.  He smiled, and said, "Oh, now I can hear it!"  Lauren came straight to me and told me what had happened.

Later that evening I sat with Ian, the broken headphones, and the Kindle.  I placed the working side on his right ear and told him to tell me when he could hear the music.  I slowly turned the music up until it could go no louder...he couldn't hear it.  I placed the working headphone on his left ear and did the same.  I began turning up the music and after a few seconds he told me he could hear it.

I knew there may be some hearing loss because of ear infections before getting tubes, but had hoped that impacted wax was reducing his hearing.

After the doctor cleaned the tube and wax out of Ian's ear he looked closely at his eardrum using a special microscope.  He told me that his eardrum was retracted, and looked somewhat flat.  He recommended that we do a hearing test asap.  Thankfully, there was an opening at that moment, so we walked straight over to the audiologist.

After the hearing test we were told that Ian had "moderate to severe" hearing loss in his right ear.  We were also told that the test was "not normal," and they felt that it was "inconclusive," so they wanted him to come back in a few weeks.  They thought that maybe his age, or the fact that it was his first hearing test was affecting the results.

We took Ian back to the doctor March 5th for a second hearing test.  Roger was able to go with us this time.  The doctor was hoping to see better results (so were we!), but the results were worse.  I, specifically, asked the doctor if he was still in the "moderate to severe"range, or if it was worse, but the doctor told us it was the same.  We asked what caused the hearing loss and the doctor said, "I really have no idea.  He may have been born that way, or it may have been caused by ear infections, which caused a cholesteatoma." He then recommended that we see a specialist (all this time we though he was the specialist!) called an otolaryngologist.

I had taken Ian to his pediatrician earlier in the day for a well-visit.  I told her about the hearing test, and that we were going for another hearing test later in the day.  She said, "Yeah, didn't he have a cholesteatoma?"  I had completely forgotten about it, and didn't even know there was a name for it, but then remembered that the ENT said he had cut a growth out of Ian's ear when he put tubes in.  We thought it was really strange, and the doctor seemed to think it was large, but we were given no other information.

After our appointment I hit the internet to do some research.  What did we do without the internet?!  I began reading about Cholesteatoma's.  It didn't take, but a few minutes to realize what likely caused Ian's hearing loss.  We are grateful that it didn't do more damage.  BUT, why didn't our doctor know that it was likely to cause bone damage, and therefore, hearing loss?  Why didn't our doctor tell us that we should see a specialist to monitor his condition to make sure it didn't grow back?  As I am reading page after page, and looking at videos about this condition, I begin wondering how our doctor was able to cut this "growth" out of his ear without cutting behind his ear.  Did our ENT do further damage to his ear by cutting it out?  Why didn't our doctor suggest that Ian get his hearing tested after finding the cholesteatoma?  Why didn't he tell us that "if" Ian's bones in his ear were damaged that he may need reconstructive surgery, placing a prosthesis in his ear that could restore some of his hearing?  Did our "specialist," our ENT, know nothing about this condition, and did he make a mistake removing the cholesteatoma?

I also found in my internet searches that Ian is not only considered "severely hearing impaired" (he is totally out of the moderate category), but he is also classified at the "profound" level at one of the tested frequencies, and close to profound on another frequency.  Why did the doctor not know this?

At this point we don't know if our doctor is trying to cover his tracks, or if he is truly unknowledgeable about this condition.  If he is unknowledgeable then he never should have touched the cholesteatoma!  If he is covering for himself...he needs to be held accountable.

Our next step is to take Ian to Cincinnati Children's Hospital to their Ear and Hearing Center.  Ian got a CT scan March 10th, so we will be able to find out how much damage has been done to his ear, if the cholesteatoma has grown, and if reconstructive surgery can be done, which might restore some of his hearing.  We are hoping for a trip to Cincinnati in July for some answers.  For now, this mama is nervous, and so sad that this precious little boy is nearly deaf in one ear, and will have to go through more tests, more specialists, and possibly surgery.

I know...things could be much worse.  I have thought that so many times in the past month.  Overall, he is healthy...he is happy...he is a joy in our lives.  He can still do one of his favorite things...listen to music! Still, no mama wants her child to endure hardship and pain.

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