Thursday, January 22, 2009

FRUSTRATED

I woke up this morning in a funk. Actually, I've been struggling to get out of this funk for a couple days now. I think it's a combination of a lot of things. Besides not having my "best g's" here to go drink some wine with and get all this BS off my chest, one year ago this Saturday my dad died (I have his bottle of Black Velvet - YUCK - just waiting for a shot to cheer his life) AND most of all I found out a couple days ago that they plan on activating my son's implants well over six weeks apart! What the hell!

A little background. Aiden's getting simultaneous cochlear implants, meaning, they are implanting both ears at the same time. This is not the norm, but becoming more so. Typically, if a child is getting both ears implanted, they are implanted sequentially, whether within a few months of each other or even a year or more of each other. We knew if we were to go bilateral with Aiden, we wanted them done simultaneously for two reasons; one, this would mean only one surgery and two, he would be hearing from both ears within days of each other.

At Aiden's last soundbooth, they gave me his appointments for activating his implants. The CI center we chose, doesn't activate the implants (turn them on) for three to four weeks from surgery to begin with and does not turn on both ears together. So they scheduled Aiden's first activation for March 9th and what we thought the second to be, March 18th. We were ok with this, not extremely excited, but it didn't run us off (a lot of centers will activate within days or couple weeks after surgery and activate both ears at the same time, or within a couple days of each other). They explained they like to make sure the first ear's maps (programming the implant is called "mapping" and it takes a few appointments to get the maps where they need to be in order for the recipient to be successful in learning to hear) were established prior to mapping (or programming/turning on) the second ear to hear.

Come to find out, Aiden is not scheduled for his second ear's activation until April 27th! I was under the assumption this would be a week apart, two at the most. Not over six. This also means that one ear will go with NO SOUND WHAT-SO-EVER from Feb. 11th to April 27th. This is not okay with me! So I sought out the help of the powers to be from CiCircle (an awesome Yahoo group of parents with children who have cochlear implants) and asked what other parents had experienced when it came to simultaneous implants. They answered as expected ... their child's "ears" had been "turned on" the same day OR within days of each other so both ears could learn together.

I'm not a confrontational person. In fact, I hate debating, arguing, or anything that could possibly bring on a disagreement. BUT, this is MY SON. If I learned anything during my dad's illness it was that he couldn't fight for himself and if I didn't fight for him, nobody would, I learned to become confrontational, in the right way (and sometimes not so right way). Same with Aiden, he cannot fight for himself, so if I don't advocate for him, who will? This has been weighing on my mind and it upsets me the more I think about it. Am I overreacting? Should I just be happy we have the surgeon we wanted since day one and be happy he still only needs one surgery? I always hate to feel selfish, that I should just be lucky my son's getting implants at all.

But honestly, why even get simultaneous implants if they're not going to turn on both ears within at least a week of each other! The whole thought process is for both ears to start hearing at the same time, and the more I think about it, the more upset I get, and the more I want BOTH ears activated on the same day! Why not? Then Aiden will begin learning to localize sound immediately and will go through therapy using BOTH ears - IMMEDIATELY, instead of teaching one ear for over 6 weeks and then having to turn around, turn off the first ear, and teach the second ear what the first just learned!

So what to do. I've been going round and round in my mind how to address this. We like our CI center, we like our team. Do I just trust them and go with it? Or do I follow my mom instinct and fight it? I know what I have to do. It's for Aiden. It's for his hearing. We've been working our booties off all year and if he's getting both ears implanted at the same time, they should be turned on at the same time. There always has to be a "first" for everything, right? Maybe Aiden will be the first at our center to have both ears activated the same day. Who knows. I do know this though, if I don't fight for my baby, no one else will.

Wish me luck. Oh - and any suggestions or advice on how to handle this/why same day activation is best is always greatly appreciated!

12 comments:

Drew's Mom said...

I certainly think you should fight this! They are missing the reason why parents choose simultaneous - you eliminate the big vs. little ear issues. I can't even believe the lag time. There is absolutley no reason that you need to get an established map in one ear b/f doing the other. If the audi is concerned about getting the ears confused, turn one on one day, the other the next. I mean, how hard is it?? We have everything organized, do the L ear then R every time. It's easy. Oh, I'm getting so frustrated for you!

If she needs to talk with an audi that has done it, let me know. I'll give you our number.

Why isn't anything easy?

BTW, it's not uncommon to wait 3-4 weeks for activation. That isn't what is concerning, it is the huge gap in activations!

leahlefler said...

I wish I could help in some way! All I can do is send a little electronic support. I hope you can prevail upon the audiologist to activate both implants within a short period of time!

Julie said...

Oh Tammy,

I'm not wise about CI stuff, though I've heard - like Drew's mom - that the 3-4 weeks to activation is normal.

But any time a decision doesn't sit right I ASK ASK ASK!

WHY do they recommend activating so far apart? Do they have a real reason, or was it just some strange scheduling fluke?

Make some noise, sister :0)

Prayers are with you,

Julie

Julie said...

Oh... this is so bizarre... you know what the word verification is?

deeffies

And my mind went "deaf-ies".

:0)

Lucas'Mommy said...

I hope it all works out for you guys! I'm having some complaints with our CI center too... and wish we would have gone elsewhere to have Lucas bilaterally implanted, because now the surgeon said he won't do the 2nd ear. We will be seeking a second opinion shortly, as I was hoping to do the other side within 6 months. I think we'll go where you go (not to mention names) for our 2nd optinion, so I might be looking for some advice...

tammy said...

Thank you all for your encouragement and words of advice. I do want to say that I LOVE our CI Center and feel very fortunate to be a part of it. I just think that the whole simultaneous process is newer to them. We're going to schedule an appt to sit down and discuss this further with our audi.

Jennifer-I hope you get the second CI situation worked out! If you ever have any questions or need contact info., just let me know! If you would go up there, we're not far at all and you know I'd have to come meet you and that sweet boy of yours! :)

Christian's Mommy said...

Oh Tammy, I am frustrated for you!

The only thing that I can even think to say that might make you feel a bit better is looking back at our experience. We only have one implant, but we desperately wanted to get Christian's aid back in his non-implanted ear as soon as we could. Our audiologist recommended a 6 MONTH wait time (um, no!). We tried to play by the rules, and when the team quickly saw how well Christian was doing with his CI, I just put the darn HA back in and the rest is history.

Bottom line, fight it. Talk to your surgeon too....I know our CI center has policies and procedures regarding all this, and that is what is frustrating. I feel each kid and family should be looked at on a case by case basis.

And regarding girlfriends to go out and have cocktails with, I'm here! It's all about pumping and dumping girlie!

tammy said...

Christina ... SMILE! I can't wait to see that baby girl! You know I'm going to have to come over and hold her! Aiden's not quite the cuddly infant anymore!

Kel said...

Just popping in with a few extra thoughts for you, Tammy! I can't wait to hear how this ends up being resolved. I am still floored that they are expecting you to wait that long between ears.

Mom to Toes said...

I'm kinda late to the party here, but wanted to give my take.

First, I am so sorry you're dealing with this frustration! Any glitch in the process can be so overwhelming. I know you already feel like there is so little within your control, and then they throw a curve like this. It's nuts.

I agree you should push hard for dates closer together.

But, if you aren't able to make that happen, I wouldn't be too stressed about it. I would ask your CI Center what their logic is. They are the experts. I don't think they would set Aiden up to have anything less than a successful implantation and activation.

Erin was without sound in her left ear for a full year and her ears are now equally strong.

I can't wait to see how Aiden does! I have a feeling he is going to be one of those superstars. With a mom who fights so hard for him and his siblings helping out, there is no way he won't be. :)

Jodi Cutler Del Dottore said...

Fight. Call the CI Center and express your concerns. It starts now...the battling. Drink a shot- okay I'm a couple of weeks late and you've probably already resolved this, if not- drink a shot and call tomorrow.
Go girl!

tammy said...

Kel - I'm anxiously awaiting Danny's activation! Thanks for your thoughts!
Wendy - "Toes" is amazing and one of our many inspirations! Thanks for sharing your thoughts, which I always love! *SMILE*
Jodi - I could use a few Jaeger's right now! Wish you were here to do a few with! Hope you're feeling better!