ENT Appointment ~ June 2013

*sighs* today was long.  Seeing your child in so much pain can take everything out of you.  We had our follow up appointment today with Thomas' ENT.  I had gone in very prepared with my concerns, questions and even computer printouts on KFS and hearing loss.  Immediately, my concerns were heard and the doctor came in to check Thomas' ears.  He saw that the left tube clearly was out of place and not working properly.  It had been not looking right for about nine months so I was grateful that he had come to the conclusion that this must be rectified.  He said he wanted to go ahead and just take it out.  I agreed with him.  We walked down to the microscope room (which is never good for my little man) and pinned him down and the doctor dug in there and pulled it out.  Unfortunately, when he pulled the tube out he also pulled out some ear canal and left a small hole in his ear drum.  *sighs*  Like I said, it was not a good day.  Poor Thomas was in quite a lot of pain for quite a while and there was some bleeding for quite a while afterwards. 

Then I was left to calm him down to attempt hearing tests with the audiologists.  Luckily, I know how Thomas is and I had prepared myself with lollipops and my charged Kindle.  It did prove to be more difficult especially with the trauma he had just experienced.  We had to wait a while though which worked to our benefit today.  We finally were called back and first up was the Tympanometry which test for fluid, etc in the ear.  His right ear was working properly and tube is still in place.  Left ear was all wrong since well there is a hole in his ear drum.  The second test we tried to do with headphones, but Thomas was not willing to cooperate with those.  He did not want them on his head at all.  So, the behavior booth we went in mommy's lap.  He did very well in there.  So, that shows that he can localize the sound.  What all does that mean?  It means once again they can say he can hear acceptably with at least one of his ears but they cannot say at what level each ear is hearing.

The plan: We wait and see how the left ear heals.  Praying it heals completely and has normal hearing without any aid.  We go back in three months.  Depending on how the left ear heals, etc. our next surgery will either be a tube removal from the right ear or a tube replacement for both ears.  He assured us that no matter the results he will continue to monitor Thomas' hearing for quite a while unlike his other patients because he does understand the circumstances of his conditions.  That put me at ease as well.  I always feel like I am having to defend Thomas and explain this is not normal and nothing about him is normal.  I also had him explain to me how the tubes corrected his hearing so that I had a better understanding.  Most people assume we have tubes due to infections and that is NOT the case.  In fact, I think Thomas has maybe had one ear infection his whole life.

We did also get the Doc ProPlugs today fit for his ears and he seems to like them okay.  I talked them up as big as I could and even had help.  They are for him to wear to prevent any water from getting into his ears.  It was an issue before but now it is even a bigger issue until the hole in his ear drum heals completely.

On a side note, the audiologists mentioned that Thomas seemed very stiff when turning in the behavioral booth.  I just stopped and smiled and explained his neck fusion and she felt relieved.  She stated that she was not a physical therapists but it seemed unusual.

Our doctor did feel very bad about pulling the tube out today and apologized.  He said in hindsight he wouldn't have done that.  In most cases, with most children, the tube is basically sitting in the ear canal and can be just plucked out.  Thomas' however was more attached.  The doctor said he felt bad to have cause him so much pain.  I believe he was sincere.

Please pray that his hear heals and the hearing is restored.  I would love nothing more than to write ears off of our list of concerns.  If not, I pray that we continue to make the right choices for him to have healthy, hearing ears to the best of our ability.

James 5:14 Is any sick among you? let him call for the elders of the church; and let them pray over him, anointing him with oil in the name of the Lord