Thursday, February 12, 2009

Short Lived

Our little happy dance was cut short today but some unexpected news. While things are still sunshine and rainbows for Mac's heart at present, his troubles are moving north.

Today we visited Primary's audiology clinic to finally get McKay's ears checked. With so much going on at his birth (and, quite frankly, bigger fish to fry) he missed his newborn hearing screening. Add to that the fact that he was discharged over Labor Day weekend for his first surgery and Thanksgiving weekend for his encore appearance, you can imagine that there was not an audiologist to be found. As a result his poor little ears have gone neglected until now.

So no big deal, right? We'll get his ears checked and then cross that off our list of "Things We Need to Worry About." Not so. Both of McKay's ears failed the screening today. The audiologist even put him through another test to rule out any fluid in the middle ear that would contribute to a false reading. She tested and tested again. Poor Mac failed and then failed again. I could feel myself get eerily calm and then the questions started flowing.

She asked, "How long was he in the NICU?" "Was he given antibiotics?" "Has he ever had an ear infection?" "Does hearing loss run in the family?" I felt like a robot. 11 days. Of course. Never. My grandparents and one uncle have hearing aides--does that count?

Apparently, some of the drugs they used to keep Mac alive and well in those early days have the nasty side effect of hearing loss for some kids. Awesome. And the heart and ears form at the same time in utero so there are come correlations between defects in both systems. Even awesomer.

Needless to say we not only did NOT get to cross fabulous hearing off our checklist today, but have been asked to get some additional testing done that involves sleep and food depriving him for a day and then attempting to get him to rest while they check his auditory system via his brain stem. I'm still not sure how that all goes down, but it sounds like absolutely the most awesomest of all. (Oh, except for the fact that hearing screening and treatments are NOT covered by our insurance policy--that's a double scoop of awesome to go.)

I am not panicking--yet. There is still much to learn before I can give myself permission to go there. But tonight I am frustrated. Believe me, I know we are blessed. I am the first to acknowledge that the Lord has been beyond generous with us. But I am ready to relax for more than one cotton pickin' minute. Is there a lesson I am supposed to have learned already? One that I've missed? PLEASE just tell me what it is I am supposed to get Zen with and I'll do it--then we can stop messing with my kid!

There. I'm done. That's all out there and now the ugliness is on its way out of me. Right now I really and truly want nothing more than a happy ending for Princess Gracie. As many of you know Gracie headed to Primary's on Tuesday to prepare for her Glenn surgery (the same surgery McKay had in November), but instead her family was given the devastating news that Gracie will need a new heart. Please, please pray for them.


Lisanne said...

Oh Mindy, I am so sorry. Hang in there. We will keep Mac in our prayers!

Allison said...

I realized very recently that Joshua never had his hearing tested either. He's old enough that I can tell it isn't an issue, as he's speaking a bit already. But I'm sorry to learn that McKay may have some issues. We'll pray that with further testing you'll get some good news.

jaci said...

Mind hang in there. Things will be ok. We are thinking of you.
Love The Lang's

Sam and Sally said...

We love you and of course pray for you all the time. We're sorry to hear about this latest challenge.

Uncle Sam and Sally

Whitney said...

Remember the legions of heavenly things that surround Mac? FDR was President in a wheelchair. Mac can be President with hearing aids if need be. And I fully expect him to be. But the insurance thing makes me want to say lots of bad words. I love you sister! xoxox Whit

Marshelle said...

I'm sorry to hear this news about cute McKay. I hope that further testing proves the other tests are wrong. Keep smiling and enjoying the small triumphs along the way. He is such a cutie! I don't know how you do everything you do. You are simply amazing. Happy Hearts Day tomorrow!


Emily said...

Mindi - I'm so sorry! Hopefully additional tests will reveal some answers. For me, being "in limbo" and not knowing is that hardest place to live. You just do not need this right now! We took Macy in for some hearing tests last year. I knew she was having a hard time hearing, but I about fell off my chair when the technician explained that she was nearly deaf in one ear, and the other one wasn't much better. After several months of additional tests, her hearing gradually got better and we are waiting to see. I'm just telling you this to let you know that it did get better. I don't know why, but she started passing the hearing tests. There is hope. Keep us posted and we'll keep praying for your sweet little guy.

Jenny said...

I am so glad to hear a little frustration in your voice! You have been through so much and you have every right to complain, whine, pout, stomp and anything else that might make you feel better. I think I speak for everyone when I say we are here to listen.

Mac has amazed us all to this point and I know he will continue.

Anonymous said...

Hey mindy hope things go good for you I know how the hearing thing goes its scarey my now four year old has partial hearing and a speech delay to boot if there is anything you need just ask even though we wherent that close in high school I still consider you a friend hang in there and dont hesatate if you need something we learned signlanguage as a result but I hope macay will not need it Rainey

The Simmons Family said...

I am a first time commenter, but just wanted to say hello. I was so exctied by your last post that McKay is doing so well!! Then I read this one... bummer. Hopefully it's nothing serious and that things will be ok with his hearing. We'll pray for you to get some good news and maybe they can convince insurance to pay for further testing!

By the way... I'm Owen's mom! He has HLHS, and is waiting for hiw new heart.

Andrea ;)

Kristi said...

Oh, Mindi. I am so sorry. Big prayers for Mac tonight.

Kristi said...

Oh, and FYI... you're one of the awesomest women I know. You can do this.

wylie said...

I read this post last week and was so deeply disappointed and couldn't believe that there was yet another hurdle that I couldn't even come up with a comment. I still can't, but our little family has been thinking and praying for McKay and you even more.

Sabrina said...

UGH, How did I miss this?! I've been exploring so many other heart baby blogs, that I neglected to check-up on my favorite man Mac. The insurance part-bogus-disgusting-more fodder for the book-and I want to hear WHY those lil' jerks won't cover HEARING?!
Keep us posted Mindi...we're praying for Mac...I honestly can't believe that if his hearing is impaired that it's too-too bad...? with 2 boys in the house = lot's o noise... someone would have noticed a severe impairment?

Simply, Sarah said...

I don't even know you, but I like to read other "heart" blogs since our foster baby had open-heart surgery the day before Thanksgiving last year. I am preparing myself and our family for the long-term if we get to keep him.
So, I just saw your blog and saw this post about the hearing tests. Anthony failed two hearing tests. My over-analyzing self automatically started thinking cochlear implants and having to use sign language his whole life. BUT, we finally were able to get the frequency-specific hearing test done, and he actually hears just fine in one ear and will only need a hearing aid for moderate hearing loss in the other.
So, although it might seem bleak, it really might not turn out to be so. Good luck!