Unilateral Hearing Loss {Seattle Children’s Hospital}

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Yesterday was Kalina’s first visit to the Hearing Loss Clinic at Seattle Children’s Hospital. We were told to be prepared for 3-4 hour visit since she would be seeing the hearing loss team. Our appointment began at 10:15 so we left our house at 8 am sharp. I only had Enoch, Kalina and Tucker with me. Tilly stayed home with Jubilee, Hezekiah and Apollo.

We arrived at the hospital with plenty of time. Until I couldn’t find parking, that is. Our 15 passenger van is too tall  to go in the parking garage, so unless there is  room to park in the first two rows (that are outdoors) I have to drive to their “oversized parking” lot. No biggie. Except when I drove there they had new signs posted that said: Staff Only Parking. ID Badge Required. So I decided I would use the complimentary valet parking. Only to drive there to see a sign that said: Valet Parking temporarily Unavailable.

*sigh*

So we drove out of the parking lot, all the way around the hospital, hoping to find parking. No luck. Seattle Children’s hospital has recently added a new wing on (yay!) so I hoped to find more parking. But what I thought was the new parking lot, was actually the ER parking. That wasn’t going to work. When I pulled into the parking lot a second time, hoping, perhaps, that the valet parking would be open, I found one empty spot. Well, empty if you don’t count the two people standing there chatting. After motioning to them and smiling sweetly through the window, they were kind enough to move and I was able to park. Twenty minutes after arriving at the hospital.

<Problems People with Big  Vans Have>

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Eventually, we met with five different people: nurse practitioner, audiologist, aural therapist,  geneticist and an education specialist. Whew. Quite a difference from our experience up here in Bellingham, where they simply diagnosed Kalina’s hearing loss and sold us a hearing aid. End of story. At the advice of our doctor, I went to our local hearing loss clinic, instead of Childrens, something I now regret.

Yesterday was a great opportunity to learn more about unilateral hearing loss in general and how this would affect Kalina specifically. Children’s still hasn’t received the CT scan they have requested twice from our local hearing loss clinic. The doctor’s at Children’s want to review the CT scan themselves because there is an odd discrepancy between what Kalina can actually hear and what they think she should hear based on her bone conduction test…

Anyway, I feel like we are in good hands now. Kalina’s hearing hasn’t changed since her last audiogram (great news)! Her hearing in her right ear ranges from moderate hearing loss sloping down to profound hearing loss. Without her hearing aid, she can’t hear any vocal tones or differentiate the sounds she can hear (in her right ear). The geneticist we talked to said 50% of cases of unilateral hearing loss are genetic- although genetic doesn’t necessarily mean passed down from me and Chuck- it could also mean a genetic mutation in her cells. She will likely be getting some genetic testing done (so she has answers for her future) as long as the insurance company approves it.

Oh, and I told Chuck last night, the more time I spend with medical providers and doctors the less I understand. Before we left I was asked if we had a “care notebook” and was given one. It is a neatly organized binder with sections for: audiograms, hearing aids, etc. It’s really cool. What I don’t get, is why I’m given one for my daughter who has hearing loss, but not for my son who has been a cardiac patient at the same hospital since January 2012…

And when I googled “Seattle Children’s Hospital care notebook” for this post, I came upon this cool link. In my fifteen billion visits the hospital, and twenty billion visits to the website I’ve never seen this…

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And one (of many) funny moments for the day. Just as the first provider was leaving the room we were in, she turned around abruptly and said, “Do you need any juice? Or  Teddy Grahams?” Kalina and I, startled, said, “um..no, we’re okay” and burst out laughing when she left the room. It was just so…odd.

Then, during our second-to-last provider visit, we were once again offered a snack. I’m pretty sure because of many clustered visits, they are told to offer snacks to the patient and family. It was just so random and unexpected the first time…

 

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11 thoughts on “Unilateral Hearing Loss {Seattle Children’s Hospital}”

  1. I think it’s absolutely fantastic what you’re doing for Kalina. I was diagnosed with hearing loss at age 16. I felt the same way–hearing aid place sold my parents a pair of hearing aids, no talk about steps to take etc. In their defense, I didn’t have health insurance growing up and even with it, (as you know) most insurance plans/companies don’t cover hearing aids/loss. ANYWAY, I know my parents fought hard for me–school and doctor wise. Never stop fighting for your “medically needy” children! (sorry, couldn’t think of any other word but, “needy”).

  2. Our kids got tested at a local hospital before kindergarten age–Germany’s great with this stuff. I am so glad to hear you’re in good hands now.

  3. Thanks for the head’s up about the snacks! We’re heading to Children’s on Feb. 24th for a LONG day of clinic visits with Abby. Maybe they will offer us snacks! 🙂 And I’m glad you’re getting more thorough help with Kalina. Hopefully it will give you some useful answers.

    1. bakersdozenandapolloxiv

      Judy- it’s odd, because we’ve had up to four appointments per day for Apollo and they’ve never offered him a snack!

  4. Thanks for the care notebook link! I have one for my daughter (she is….complicated!) and am in the midst of revamping it at the moment. Kaylee has hearing loss in amongst her crazy list of stuff. The tricky thing is, she is a non-verbal, cognitively and developmentally delayed 2 year old who sees life very differently to the rest of us. Testing her hearing is an exercise in frustration for our poor, long-suffering audiologist and amusement for me. She will be making loud and exciting noises that we are 90% sure Kaylee can hear and Kaylee completely ignores her because some dust mote or the back of her hand has captured her full attention. After Kaylee’s heart surgeries, I’m a lot more laid back about hearing than I would have been otherwise 🙂

  5. Hurray for Children’s. So glad you had a good experience – we’ve always loved their CCC (I think they call it the Childhood Communication Center?). It can be a long day, but it’s great to see all the specialists in one go.
    Funny about the Care Notebook. I guess each department handles things like that separately. We were never given one, but I made one for Tate when he was little… not it fills three large binders. *sigh* I have copies of everything so if we’re going back and forth between Children’s and WWU and the family doctor I can just hand them a copy of the latest whatever. (Why on earth should it take so long for the B’ham doc to send the CT? Crazy.)
    Anyway, I’m so glad at least this piece of the journey went smoothly!

    Julie

  6. Sounds like a great appointment! Have you thought about putting Kalina in a sign language class? It might be interesting to get a taste of deaf culture.

  7. Just a word of advice from someone who is now facing a $3,000 genetic test bill, just because an insurance company gives approval for a test, it does NOT mean they will actually pay the bill. We were told no prior authorization was needed and we were cleared to get the test, only to find out they don’t cover pretty much ANY genetic testing unless in utero. I was told it was my responsibility to know what my coverage was. Now we are appealing. Anyway, just wanted to give you a heads up.

  8. I totally hear you on the big van parking. We were just at the hospital for my son to have surgery. They have reserved parking for large vehicles with a sign clearly stating what that means. It never fails that there are compact cars parked in some of those spots. They are close to the parking deck elevator so prime location, you know.

    Hope they are able to help Kalina!

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