Friday, April 10, 2009

Bilateral Implantation for Lucas?

No, not right now.

We headed to CHOP again today. I'm so glad that our visits are thinning out a bit in comparison with his first year of life. It's 85 miles each way, and the trip is often anti-climactic, like today. I also dislike visiting the ENT - I'd much rather go to audiology, because they actually run on time! We drove an hour and a half, then waited for an hour in the waiting room, then another half an hour in the exam room, only to visit with the doctor for a total of 10 minutes, and drive another hour and a half home. Very anti-climactic.

The one thing I look forward to though is eating at Baja Fresh. It's not exactly on the way home, but we make it part of the way home. It's fresh, fast, Mexican heaven, if you ask me. In our po-dunk town, we don't have such luxuries, but rather Pennsylvania Dutch home cookin' everywhere you look. Okay - let's be fair - there's SOME good food - it's not all dutchy, but I still wish we had a Baja Fresh.

Let's move on to the topic at hand. I would like for Lucas to go bilateral. I mean, I would REALLY, REALLY, REALLY, REAAALLLYY like for Lucas to go bilateral. Audiologically, he's a textbook candidate. He gets NO benefit from hearing aids. I mean NO RESPONSES in the booth, even with hearing aids. I'm talking CI activation day was the FIRST time he reacted to any kind of sound, ever. Get my drift? It's kind of a no-brainer from that standpoint.

But, medically it's another story. Because of the cochlear abnormality caused by his Enlarged Vestibular Aqueducts, Lucas was at risk for a CSF (Cerebral Spinal Fluid) gusher in the first surgery. Bingo - leak occurred. Thank goodness Dr. K was able to stop it and pack it. Apparently it was more severe than he let on, because he was really happy to see Lucas well on activation day. About 10 minutes before Lucas was activated, he told us that he probably would never make Lucas bilateral because of the gusher (there should have been more time between appointments, but of course, ENT was running late). Let's just say that I was a bit upset at the beginning of activation (Nate will tell you that is an understatement). I was not prepared to hear that. I was expecting "let's schedule bilateral implantation in a few months", and I got "probably never."

I just won't take no for an answer though. So, today we discussed it again. He wasn't quite as adamant about never implanting, but he doesn't want to do it just yet. He wants to see how Lucas does with the first implant. Okay, fair... better than never! So, we're going to have to wait and see how he does with one, to make a better decision about how he would do with two. And although I'm not interested in just playing "wait and see", I'm also not about to risk his life for a second implant, and that's exactly what we would be doing.

So, we are going to try the bimodal thing (one CI, one HA), even if hearing aids were not previously beneficial . In my opinion, we have nothing to lose. Maybe the sound was simply too quiet before, and now that he KNOWS what sound is, maybe he'll think "ooohh, that's what that was....!" We want to continue to stimulate the auditory nerve, in case going bilateral does become an option in the future.

I'm prepared to get a second opinion, in fact I know exactly from whom I would seek that second opinion. Hint, hint: Aiden. But, Dr. K is the one I'd want performing the surgery since he knows exactly what he's up against. I believe that two implants are certainly better than one, but right now I need to be thankful for one. And thankful we truly are. Lucas is doing fantastic, having jumped 100+ decibels, babbling, and responding to spoken language. Hearing loss is not life threatening, but getting Lucas a second implant could be.

So, one implant it is. We don't really have a choice. *SIGH*


AJ's Mom said...

Good post. I didn't realize he was at risk for CSF gusher. Before AJ's surgery I wanted to submit paperwork for his 2nd CI hours after surgery. Now, after seeing his struggles post-op, we aren't so sure. It's a big decision. One that is not to be taken lightly. You said it, sister. Amazing that he's jumped 100+ decibels. Truly amazing. PS I blogged-thanks for your nudge as to how AJ's doing!

Kel said...

Ugh!! That stinks. We had a minor gusher on Danny's second implant, but nothing that his ENT seemed all that concerned about, so I'm working under the assumption that it wasn't that bad. I hate that it was so bad for Lucas, that it's holding him back from going bilateral. He IS doing wonderfully with one, though!

Melanie said...

Sorry to hear this. Peas has LVAS too but I guess it's not enough to pose this risk. I have neighbors who have three kids who all only have one implant and they are doing AMAZING. Lucas will also!

Jennifer said...

Sorry to hear you might not get a second implant but I have seen so many kids with one who do amazing.

Val said...

Keep in mind Gage was never a candidate either until a few months ago. He did well with one, wait it out, they can scan him again later maybe when he's three or something and see what they think then, he'll do fine w/one though!

tammy said...

I'm just catching up on my blogs and first ... Lucas looks so cute with his new haircut! My husband wants to cut aiden's and I say no way! But he has curls in the back -once the mullett comes, it's gone! haha

Lucas has been doing so great with one CI, and while I don't blame you one bit for wanting to go bilateral, there are so many success stories of having only one too! The future is wide open for Lucas! AND if you even do head down for another opinion, you know we'd have to meet you! He is an amazing man!

And lastly, thanks so much for the encouragement of bargain shopping. My mom's great at this too, just didn't pass it on to me as much. Maybe you can teach me some time saving tips! BTW, one of my older kids had that same exact playdoh table! We used it more as an art table since I hate playdoh! haha

Oh ... and everytime we go to Ohio, we obviously go through Penn. I always wonder as we're driving through if you live in any of the beautiful towns we drive through. Would love to meet up sometime!

Renae said...

You have SUCH a great outlook on the situation and that is the most important thing you can do for Lucas! He will do amazing either way you go! You've already gone from never to maybe in the future and that's a big step! Get another opinion and another and go from there!! Best of luck!!