Thursday, January 14, 2010

Can You Hear Me Now?

Turns out, that's still the question.

We saw the ENT yesterday, and he diagnosed Becca with permanent moderate hearing loss due to nerve damage. He has started the process for her to get hearing aids. We have an ABR scheduled for January 29th. (The ABR is the in-depth hearing test for which Becca has to be sedated. It's the same test she had last winter and again immediately after she had her tubes placed last February.)

HOWEVER, after talking to the audiologist this morning, she thinks he jumped the gun on making the diagnosis and wants to wait and see what the ABR says before we make any diagnosis.

That's the short version. Here's a bit more detail, for those of you who are interested:

I think we may have to change ENT's. You know how I've felt about this particular doctor in the past, and now I am pretty sure that he and I just cannot work well together. He is, according to everyone else familiar with him that I've talked, the BEST in the city, but somehow we always fail to communicate. Yesterday was no exception.

After waiting forever, we finally got in to see the ENT. He looked in her ears (still not washing his hands - hello, RSV season!), saw lots of wax in one and that the other tube "wasn't functioning," cleaned the wax out and looked again. (The wax cleaning involved a lot of manhandling by me and a nurse. Unpleasant.) He saw that both her eardrums were moving like they should be. (Even though one tube wasn't "functioning"...hmmm...according to our fabulous pediatrician, whom I consulted this morning because I was so confused, that probably means that that ear is draining on its own and Becca might have outgrown the need for a tube in that ear). He looked at her recent hearing tests, on which she scored poorly, showing a moderate loss, and ordered another test, the OAE (which is the same test they use for newborn screening).

We shifted to another waiting area, batted away snotty kid hands, and then saw our favorite audiologist, Mary. She worked with Becca in the NICU and through last fall and winter when the tubes were placed. Since then, we have been bumped around to several different audiologists (they have a rotating schedule), which has been frustrating. I've really had to be Becca's advocate here and make sure they are looking at everything together, but hearing is so technical that it's hard for me to follow everything they are saying, looking for, and testing. So I was glad to be back with Mary, who knows Becca, knows her stuff, and knows how to communicate with parents. We did the test (also involving manhandling, but Mary helped distract Becca with puppets and bubbles!), and she failed in both ears. (It's a pass/fail test.) Mary said that the test, while objective, isn't entirely reliable because the tubes can muffle the feedback response for which they are testing. She recommended that we do a sedated ABR and see what we find. No mention of permanent loss. She talks to the doctor, who tells her that he is not going to replace the non-functioning tube, so we will have to sedate her for the ABR alone. We decide to go ahead with it anyway so we can get a definitive answer (even though we thought we had a definitive answer last February).

We go back to the second waiting area, continue to bat away snotty hands (hooray for small spaces with germy toddlers in RSV season!), and then finally see the ENT again to get a plan. He says, "Well, I'll see you back in 4-6 months to check the tubes, and we'll do the hearing aids and see where we are." Um, what? Sorry? Hearing aids? I mean, I knew that this was a possibility, but how did we get there all of a sudden? I, of course, ask him for more information, and he replies, "Oh, she's got a moderate hearing loss due to nerve damage, and that requires hearing aids." I ask if it's permanent, and he says yes.

What? Is this how you tell parents that their child has a life-long disability? Were you even actually going to mention it at all to me if I hadn't asked? I'm just supposed to say, "Oh, okay, hearing aids, sounds fun." WTF?

I ask him for more information, and he launches into an extremely detailed explanation of the hearing process and the structures of the ear, complete with diagrams. I just wanted to know how and why he was certain about this diagnosis. I mean, if she had nerve damage, wouldn't she have already had it last year? She was 7 months old and out of the NICU for 3 months at her last ABR. Why would it just now show up? I never got that explanation. At this point I was so exhausted, confused, frustrated, and scared that I couldn't even wrap my mind around the right questions to ask, let alone his scientifically intricate lectures. Unfortunately, at this point, it was the end of the day (even though our original appointment was at 2:00!), and the audiologist -- you know, the doctor who actually speaks English, not doctor-ese -- had already left for a meeting.

The really odd thing is, I still kind of like this ENT. He's kind of charming. But incredibly frustrating. And not a good match, parent-to-doctor. I can see how many parents like him, particularly if their kid has clear-cut needs. But I think Becca and I are through with him. Or at least I am. Maybe John gets his appointments from now on.

I tried to recollect all of this for John on the way home, sitting in rush hour traffic with a toddler who just spent her entire naptime stuck in a stroller or being poked and prodded and manhandled and having things shoved into her tiny ears. John asks me the obvious questions that I hadn't been able to articulate in the doctor's office, and I feel like I've let him down when I don't have the answers. I mean, this is my job! I am the one who goes to these appointments, but he is just as much a parent as I am, so he deserves all the information. John and I both take great comfort in understanding what is going on with Becca medically; we always have. If we know what we are facing, it's much easier to deal with. Normally, I'm pretty good about filling him in. Not yesterday. We spend the evening (post-church and post-post-church meeting) trying to figure out what is going on...and I, at least, found myself asking, "Can't she just get a break?"

Reality check: Becca has gotten a lot of breaks, considering. But she shouldn't have needed those breaks, and she wouldn't have, if she had gotten a break in the first place. (Wow, did you follow that?) And I'm really not worried about this particular diagnosis, even if it does turn out to be true. My dear, dear friend Sarah (a.k.a. "Hunter's mom" and Becca's future mother-in-law) has moderate to severe hearing loss and has been in hearing aids since she was 22 months old. Her mom is chock full of information about raising kids with hearing loss. (Sarah's older sister also has the same kind of loss.) And both Sarah and her sister, Kelly (Hi, Kelly! Do you read the blog still?), are wonderful, beautiful, highly-functioning individuals, and they have both earned their Master's Degree in helping professions. Because of their example, their friendship, and Becca's (literal!) never-say-die attitude, I have no doubts that Becca will face and overcome this challenge like every other one she has met.

But hasn't she had enough challenges in her 26-month existence to last a lifetime?

Of course she has. But that's not how life works. And if she's going to have another challenge, frankly, I'm glad that it's this one. She can do this. We can do this. And besides, hearing aids come in pink...and with glitter.

This morning, I was eager to get more answers, so I left a message for the audiologist and Dr. Collins, our pediatrician and heard back from both quickly. (I really love good doctors now. We've been spoiled. I love good doctors...and we have several of them.) Dr. Collins didn't have a lot of answers, but she did help clarify what we did know and was generally encouraging about Becca's hearing and her development in general. Then Mary (the audiologist) called and made me feel worlds better. As I said earlier, she is not ready to give Becca a diagnosis. It is possible to explain away all the poor test results: the tubes can interfere and the behavior testing isn't strictly objective and depends a great deal on how much Becca participates. But she also said that it is possible that Becca's hearing has gotten progressively worse since last February's good ABR. We know that she's at a high risk for hearing loss for several reasons, all related to her prematurity: she was deprived of oxygen, she developed high bilirubin, she had pulmonary hypertension, she was on a lot of heavy-duty antibiotics...and there are probably other risk factors that I'm leaving out. We had assumed that if these factors were going to affect her, they would have done so already. I mean, she has been on the antibiotics for 15 months! According to Mary, though, (and this is interesting) even though these conditions occurred quite some time ago, their effect can be progressive; essentially, they could still be snowballing. They would have expected these issues to crop up earlier, but, then again, we haven't had a good hearing evaluation since that one in February. So we'll wait and see what the test says. Mary was able to move the test up 3 weeks, so that's less time to worry! We'll go two weeks from tomorrow at the crack of dawn. I take that back - we'll have to leave before dawn to get there by 6:30. Wow! I will, of course, let you know what we find out!

I the meantime, here's a picture of our cutie in her adorable coat that is even more adorable without her helmet...maybe those long ears are better to hear us with!


  1. Well, long blog but interesting. Becca is lucky to have such good advocates as parents!

  2. she's in good hands with you as her mom, nancy! i heard many of the same complaints/praises from parents of children we referred to your ENT. a second opinion never hurts. OAT (otolaryngology assoc. of TN) is a great group with some great peds ENT's. Crook Jr. is fabulous! :) good luck! keep us all posted on itty bitty!

  3. I think you're exactly right about Dr. Werkhaven being better with clear cut issues. That's probably why we liked him so much. Parker had a thyroglossal duct cyst. It had to come out, and we knew that. Our ENT here in Glasgow sent us to Dr. W. because he's the best. He did the surgery (and did a great job!), and it was over. You hit the nail on the head, girlie.

    Is that test that Becca had the one where they sit in a room, and the audiologist plays a noise on one side or the other of the room? Parker wouldn't cooperate for that one. He just looked all over the whole entire time. :)

    I hope you find an ENT that will better accomplish the goals and work with the needs that Becca has. ((HUGS)), Nancy. I can't imagine how frustrated you were yesterday. I would have just come home and cried and cried.

  4. Yes, yes, yes I read your blog! And I read every word of that post. All though Sarah and I are *awesome* - as you so eloquently said in your post...I really do pray that Becka doesn't have to deal with hearing-aids...on top of everything else. And, if she does - well - her Aunt Sarah and Aunt Kelly will help her with the art of using the hearing disability to her advantage (talk about selective hearing)...bwahaahaaahaa. :) Just kidding - that's probably not what you need as a mom. We'll coach her on how to wear her hair in a pony-tail with pride as her sparkly pink hearing-aids shine through. :)

  5. Andy(the husband), has very severe hearing loss. We have been to 3 different ENTs, 2 audiologist, and he had 2 major sugerys only to find out that he has permanant loss and hearing aids are the only thing that will help. I say help because he still has LOTS of problems even with the hearing aids. I tell you this not to scare you or make your worries worse, only to commiserate with you. I think hearing issues are very difficult to diagnose because there are so many things that could be going on. I wish you luck with this and also want you to know, it is ok. Andy survives everyday only hearing about 75% of what I have to say and he LOVES it!! Lesley

  6. Dude! They come in pink and can be glittery? That's way cool!

    Hugs and love to you, Nancy. And remember that it's okay to have a bad day. It sounds like you have lots of support around you and nothing permanent happened because you got frustrated. You are still an awesome mom with amazing dedication! I SO love the way you describe Becca's tenacity (and SO sympathize with the frustration of how could there be one more thing!!??). I can't wait to meet her someday.


  7. I found your blog through google- I have my fingers crossed that future hearing tests turn out well. Our little guy has a moderate hearing loss in both ears and does really well (his speech is actually ahead of his hearing peers, because of early intervention). Anyway, just sending along lots of positive thoughts!

  8. I felt sick reading your blog. Uh. The--don't touch my baby! The--will my baby have to fight RSV too? The--why can't you speak English? The--why are you guessing that's my baby's prognosis? The--why couldn't I think of these obvious questions when I was talking to the doctor? The heart ache that I don't know the extent of the effect that the premature birth had on my baby.

    I love your positive vibes. Go with your gut. Thinking about you and praying for you, John, and especially Becca.

  9. What a day! Despite it all, it sounds like you have a good take on things and have a plan. I find having a plan (no matter how much it falls apart later!) makes me feel better about things.

    And, by the way, I think pink and glitter hearing aids can be quite the fashion statement :)

  10. Aggghhhh! Is there anything more humiliating than a doctor who makes you feel like an idiot with his or her lack of communication skills. I've had the same problem in the hospital. Tanner spent ten days in the hospital and somehow I never knew she had a staph infection in her port. I talked to a doctor every day we were there. How could I have missed that? It makes you feel stupid, but we smart girls know we're not. Sometimes the most brilliant doctors who can understand medical stuff I can't even begin to grasp can't master the simple task of speaking in a language us simple folk can understand. You did a great job advocating for her. Keep us posted.

    Beth Page

  11. You know each time Em goes to the ENT she gets a different reading- some show negative pressure and fluid- then the next she has hearling loss, etc. Then 2 weekslater they are normal. It is inconsistent each time. I think it's great you have the procedure in 3 weeks- it sounds like you can have more concrete results. With ears it is often hard to get conclusive results and it sounds like those may be on the way.
    Hang in there! We love you

  12. Got 2 words for you... Dr. Goudy. Great ENT, and super cute :) And come on, if we have to see doctors all the time, they might as well be good looking, right?