Tests and More Tests – 6

The last of the many tests this year was the auditory brainstem response (ABR). As noted earlier, this test was supposed to accurately read the threshold of hearing for each ear. I was concerned about this test because they had to sedate Ben heavily to record their results. Given his many challenges we could not be sure how he would react to the sedative. I remember sitting on the hospital bed reciting to Ben his favorite story, Officer Pat, while he slowly fell asleep in my arms. I don’t know why it scared me, but it did. We watched all the computers hooked up to Ben as they delivered sounds to each of his ears and the sound waves registered on the screen.  Neither Dennis or I had any idea how to read it, but each time we saw the wave blip across the screen it caused a kind of excitement; almost as if our kid was participating in some kind of competition

. At the end of the test as we waited for Ben to wake up from the sedative (which, to me, seemed like an eternity) the doctor went over the results with us.  The testing showed significant hearing loss in both ears.  What???…I honestly thought my jaw would hit the floor.  This bit of news came out of left field.  Nothing we had read prepared us for  hearing loss.  How do you communicate with a child who already has multiple challenges, when he can’t even hear you?  After dropping this news on us came the BUT…. But what?  Apparently they weren’t entirely sure that fluid was cleared out of Ben’s ears and that the results could be slightly skewed.  So, why did we do the test???  It’s been a long time, but I honestly can’t remember if we actually got an answer to that question.  His conclusions were that he wanted to repeat the ABR, he wanted us to strongly consider tubes, and he wanted us to consider an evaluation for hearing aids.  All this was based upon a test we were just told might have bad results because there may or may not be fluid in Ben’s ears.  I’ll be honest, my initial response was that I wanted to take my son home and just wait a while before we put him through more tests.  It was time to go bury my head in the sand!  Fortunately, my level headed husband was there and was willing to discuss options with the doctor.  We had been considering for a few months when to have eye surgery to correct Ben’s strabismus, and had decided to do it during the summer which was about four months away.  Dennis suggested that we arrange to have the second ABR done while he was under the general anesthesia during that procedure…great idea.  If Ben was still having the chronic ear infections we would then consider having the tubes placed in his ears.

My feelings at this point:  Tired and confused.  We had some good news to rejoice about and some not-so-good news to worry about.  It seemed like every day something new was coming at us, and it was hard at times to keep a positive outlook.  I remember at this point wondering a lot about what life would be like in the future when Ben was older and his disabilities would be more noticeable.  What a useless exercise that was.  Nowhere in those future predictions did I imagine the utter joy that this young man would bring to me.  My perception would certainly not become my reality.