Thursday, March 24, 2005

Eh? What? What?

I hate going to the audiologist with Ellie. Actually, I hate going to every medical specialist with Ellie. They're always looking for something to be wrong, and it often is, especially when I'm not expecting it.

We have no reason to believe that there's anything wrong with Ellie's hearing. But hearing problems are common in kids with Down syndrome, so we went to have her hearing tested last July. Then again in January. And again today. Her tympanograms are flat. They're always flat. She has tiny little ear canals and the tympanogram doesn't work on her.

After the tympanogram, we go see the ENT. We have to hold her down on the chair - it takes 3 of us - while the otolaryngologist scrapes her ear canals clear of wax with a tiny metal hook, then looks into her ears with a special microscope. There is much screaming and a little bleeding. It's awful.

After the tympanogram and before the ENT, we try for a behavioral hearing screening. I hate this stupid test. The baby sits on your lap. A strange woman goes into an adjoining room and calls the baby's name. The baby is supposed to ignore the speaker and instead turn her head to a black box on the wall. When the baby looks at the black box, it lights up and reveals a stuffed animal inside. All this time, a nice lady is sitting right in front of you and the baby, waving toys in front of her face to distract baby from the test. Wheeeee!

Ellie actually does OK at that part, especially once I told the audiologist to get the assistant out of the room. (I can direct Ellie's attention forward myself, and then she's less distracted. She's going to choose a real person with real toys over some stupid stuffed animal behind glass every time.)

The next part is what sucks. When the baby is good and frustrated with the test, the audiologist stops calling her name and plays soft tones instead. Baby is supposed to look at the box again. Ellie could care less about the damn box and wants to get down and go home. I don't blame her.

So the behavioral hearing screen failed again this morning. And so even though we have no reason to believe that she has hearing loss (she tests normally on voices, she just gives up before they can test her range with the tones) she gets to have another ABR.

The Auditory Brainstem Response test is what's given to newborns in the hospital. It's non-invasive and 100% accurate. Hooray! Ellie passed her newborn hearing screening! But wait. They only test a limited range at birth. To get a better picture, they need to do it again. OK. But wait - toddlers won't stay still enough for the test. So she needs to be sedated (oh joy, I just love to see my kid stoned). But wait - because of her repaired heart defect, they won't sedate her. Too risky. So she has to go under general anesthesia. No risk there!!

So now I'm boiling away. I tried to schedule the ABR in January, hoping that we'd be able to cancel it after this try at the behavioral hearing screening. For some reason, they didn't schedule the ABR after I called in January. So after the audiology appointment, we go back to the waiting room and wait. And wait. And wait. 20 minutes later the audiologist comes in to tell me that she's scheduled the ABR, on a day 2 months from now, when we're going out of town .

2 months more agony of waiting to find out if my kid has hearing loss. And there's no way we're taking that date - I'm not missing my youngest sister's graduation. (Two master's degrees! Wow!!!) It would have been nice if they could have given us a choice of days. But no. So now I'm waiting - again - for them to call me back to tell me when my kid is going to be put under.

I hate this. I really really hate it. The day to day stuff? Hard enough, but I can deal. The medical stuff on top of it all? Horribly unfair.

4 comments:

none said...

I sooo agree with you there. The medical stuff we could definitely live without!

Congrats on your sister´s graduation! Wow!

chasmyn said...

I always hated the medical stuff. Always. It haunts me to this day.

Psycho Kitty said...

Oh, no, the Chica's girl just had to have the ear-wax removal thing done, so I am graphically familiar with that horrid process. Poor Ellie! Poor *you*!

Lori said...

I so understand your frustration. Taking Evan to the audiologist always seemed like a waste to me. I never, ever felt like we got an accurate result. The medical stuff can sure weigh you down. I'm glad to read you assert yourself with the drs. It is a necessary skill. Hope Ellie is feeling better, by the way!