Friday, October 03, 2008

Information Processing

KayTar missed school on Wednesday (and Thursday and Friday), but I kept her ENT appointment because she wasn't feverish (yet). I had questions I hoped to get answers for and I didn't want to cancel unless I absolutely had to. Turns out, I actually got some answers. Imagine that! I'm going to break them into categories to make it more easily digestible. I've had two days and I'm still trying to swallow it all down.

1. Progressive hearing loss...

was confirmed. With her right ear masked (white noise fed into her functioning ear to block out sounds) her left ear tested completely in the profound range. There was a spike at the very end, but it wasn't high enough to get into the severe range. However, her bone conduction results looked much better than the regular test and the audiologist isn't sure of what that indicates. She said we definitely need an ABR to get more information. The ENT said this can be done during her surgeries, it will just add about an hour to her overall anesthesia time.

I asked him to give me the odds of it progressing to her right ear and he said there are none. However, he did say that if we were to get an MRI of the temporal bones and detect a soft tissue abnormality on the left that isn't present on the right, then that would be a good indicator that the right ear is safe, but no abnormality means no indicator. Her CT of her temporal bones was normal, but an MRI has more detail where soft tissue is concerned and an abnormality might be detected. Her brain CT was clear, but her brain MRI was not...that sort of deal. So if and when she has another brain MRI, we will add on a temporal bone MRI to reduce anesthesia for her. She sees her neurologist on the 13th, so I suppose we'll chat about it then.

He also said her hearing aid is probably not helping at all at this point.

2. Surgery


He thinks we should move the surgery up. In fact, when the nurse came in to schedule it she said, "How is October 14th for you?" And then my heart just fell right out my ass and landed on the exam room floor. Thwack! It was a little embarrassing, because then I had to scoop my heart back up and swallow it down again. Gulp. Her ENT feels that postponing the surgery until December will cause her to miss more school for infection than she would miss for surgical recovery time. I see his point, I've thought it myself to be honest, but...of course there is a but...I've been easing myself into this decision. See, I've made it, but I know I don't have to act on it for a few months which provides me with ample emotional digestion time. When he talked about moving it up, but insides were all "Whooooa! Let's throw on the breaks here, people! This is not what I signed up for!" My brain was all, "Oh, yes. I see your point. If that is what is best for KayTar, of course we'll do it." Then my insides were like, "But we have loads of agonizing What Ifs to go over before this happens! Emotional torture yet to be experienced!" and my head was like, "If you've decided it is the best thing for her, why wait?" I should sell tickets to these debates, I think.

Since I couldn't make a decision, I did the next best thing...I talked to our pediatrician. God love her, she told me that either decision would be fine. She sees the medical reasons to do it sooner and the momical (yeah, I made that word up just now) reasons I might want to wait. However, she did inadvertently lead me to an epiphany of my own by reminding me that the recovery will be no picnic for KayTar. If she wasn't getting a g-button at the same time, there would be no way we'd be able to do the tonsillectomy in the first place, really. Can you imagine KayTar wanting anything to eat or drink after throat surgery? HA! As it stands, she will be in the hospital for about a week and then she will be home and not feeling great for another week at least. If we do this during her Christmas break, it will ruin her holidays. I don't want her to have horrible holidays! There are other reasons, too, of course. Cold and flu season is descending upon us and being tonsil-free and in possession of a g-button will make it much easier on her. Sure, she'll miss 10 days or so for the surgery, but hopefully she will avoid at least that many absences by having the surgery. The only downside seems to be that I'll miss a week of my classes while I'm in the hospital with KayTar. If that is the only real problem I can come up with, I don't really see any reason to put it off. And just like that, I think I'm okay with it, and not just in the I'm-forcing-myself-to-be-okay-with-it-through-sheer-force-of-will kind of okay, the REAL kind of okay. I might even feel a tiny bit of peace about it all. Strange how that happens when you least expect it.

On Monday, I'll call the nurse and see if the 14th is still available for both the ENT and pediatric surgeon and then we'll go from there. The trickiest part of this is going to be keeping her healthy long enough to HAVE the surgery, I think!

29 comments:

Don Mills Diva said...

I guess it IS better to get it out the way as soon as possible...

HUGS to you both.

Chaotic Joy said...

OK, let me try to understand. She is having surgery for a tonsillectomy at the same time she is having her g-tube surgery? And at that same time they will also do more investigating on her ears? Did I get that right?

And if so, Good grief. My heart is now on the floor with yours. I love you. That's all. Just, I love you. You're a rock star in my book.

Kyla said...

In case my meandering blabbering was hard to follow, Joy was exactly right. She'll be having her tonsils and adenoids removed, getting a g-button installed, and having her ABR (hearing test) done at the same time in the OR.

amanda said...

It really is not fair, you know, that your little princess should have to go through so much... Hang in there, I am keeping you all in my prayers...

flutter said...

Kyla, you and Josh seriously handle these things with such grace

tierd said...

I wish she didn't need any of the surgery, of course. Maybe it's good to get it over with so you all can move on. Easier said than done, I know. Thinking of you and hoping for clarity and strength. And wellness for Kaytar.

Karen said...

Kyla - I waffle like you. I love your debating style. How great is your pediatrician, letting you get there with just a little help. Amazing.

I do hope this means healthy, happy holidays and extra protection from colds and coughs in the coming months. I think it will. You are doing a great job. keep going -

AJsMom said...

I suppose it's good news that they can get everything done at the same time. One time under anesthesia, instead of having to be stretched out over several procedues.

kittenpie said...

It sounds like a good decision, as your head knew, and I'm glad your heart has decided it's okay. I'll be thinking of you guys all month, now!

mommamia said...

Will be thinking about you. I know how hard this is. Having the button and another surgery to go with it. If you need anything you know how to contact me. Lots of hugs for all of you.

Oh, The Joys said...

You are on my mind, Kyla. xo,J

Julie said...

It sounds like a good decision. Plus less to worry about around the holidays. I hope she's stay healthy for the surgery and her recovery is swifft. Aiy, can we set up an adenoid surgery support group?

sheree said...

oh kyla...I do not envy your situation AT ALL. Big hugs to you , my friend. I know this is just too much and let me just say, I am proud of you for even being able to pick your heart up after it fell out of your ass. Mine would still be laying there on the floor. You are such a strong mama.

KayTar is so lucky to have you.

Caelan Ethan said...
This comment has been removed by the author.
Lisa b said...

Fingers Crossed!

Kristin said...

My, that is so so soon...but I think it's best for her. You know, voting from afar and on the outside and all. :)

I didn't know she'd need a whole week in the 'spital, though. That's a long time.

Amy Y said...

I think that waiting for the surgery will be tougher in the long run because the anticipation will be mounting that whole time... If you do it sooner, rather than later, she will be all better for the holidays...

Mama, I don't envy you but I admire your strength and tenacity. You are something special, that's for sure. I agree with your other readers ~ KayTar is a lucky little girl.

Anonymous said...

http://www.umdf.org/site/c.dnJEKLNqFoG/b.3042169/

please check out that link. maybe it will help.

~aj~ said...

I'm also so proud of you for picking your heart back up so quickly and for being able to look at all of this objectively. It will no doubt be a hard week for everyone (KayTar especially). You are all in my prayers!

jeanie said...

Wow - big day for you both on the 15th.

Good luck.

runafteryou said...

So, here we go...You and the lovely Kaytar will do beautifully, I just know it!

SpondyGirl said...

You are amazing. Please let me know if I can do anything to help. I think of you and your family all the time.

Magpie said...

Wow - that is a lot to digest. Here's hoping for good results...on the 14th.

Angie said...

I am a lurker on your sight, but am de-lurking to ask a question. Has Mitochondrial Disorder been considered with Kaytar? I have a friend whose daughter was just diagnosed. Her daughter doesn't eat either (they are considering a feeding button, too). Hearing loss can be associated with MD, too. Just a thought. I read your sight b/c my 5 year old has a genetic disorder and I identify with so much of your journey.

Christine said...

Oh you guys are totally in my thoughts. She's such a sweet girl. That picture kills me.

Hetha said...

We've always stacked as many procedures onto a hospital visit as well. We once did an MRI, upper endoscopy, ph probe, and EEG all at once! I think it makes it easier on the kiddos and better for us to have it all over at once.

"Momical" is brilliance my dear!

No Mother Earth said...

I totally understand the momical reasons not to feel rushed into the surgery, but if you already made the decision, then the best thing to do is just close your eyes and jump.

Or jump with your eyes open. Even better. :-)

womaninawindow said...

You are a wonder.

And a writer.
Even under the weight of it all, you and your heart make an apprearance center stage.

my best to you guys

liv said...

I don't know how you do it. You're one tiny powerhouse of a woman. xoxo