Thursday, December 11, 2008

So What is Going On???

After months of this mysterious swelling and pain in his ci area, it's been determined, when this just would not go away (even w/adult antibiotics)that Gage's cochlear implant is indeed infected. He has very unusual anatomy in his ears and has always suffered from chronic ear infections. Unfortunately, this time we weren't able to make it all go away w/oral antibiotics. This is why a PICC line was inserted this week.

It's basically used for long term (more than a week) IV antibiotics. He is supposed to be on this for three weeks in hopes that it will rid him of this infection. I had very high hopes that this would all work and he would keep his ci as the other alternative would be removal. We still have high hopes, however, the last couple of days it appears to be red again and increased pain. He asked me today (knowing that removal may be imminent) "could they just put more iv's in my legs and my other arm too?" hoping that would save his ci. I just smiled and assured him that inserting more iv's was not the answer. "If these drugs don't work, it's likely gonna come out." as I try to always be honest with him.
So as the conversation deepened on the subject, I asked Gage what would he miss most, while he couldn't hear should we need to remove his ci. His answer? "Music" Now how did know that?
I turned my head so he didn't see the tears fall and I turned up the radio, desperate to find ACDC...I mean what if we are down to our last few days of hearing? It could be months before he gets a new one.
It only took a couple of miles of driving in a desperate panic, disappointed there was not one Leona Lewis, not one Beyonce, not one ACDC song on any station, before I realized...this was all wrong. This was not a goodbye to the love of his life Leona, nor his obsession with Back in Black. It would be more like a break...so as any good mother would do....
I reached into the console and whipped out some my all time favorite rap songs. He loved them back when he was still a little parasite inside my belly. I swallow the lump that had formed down in my throat and said "Gage, why don't we listen to some rap songs? Instead of just listening, start paying more attention to the way these songs feel. Then if you have your ci removed, you'll still be able to keep up with some of these songs, just by feeling instead of listening." He looked at me and just halfway smiled, "hmm, okay" and a minute later he says "Mama, would I still be able to talk?" I smiled and said "of course you can still talk." He replies "But mama, would I say my /r/'s right?" I told him lots of hearing people don't say their Rs right so no need to worry, people would know exactly what he was saying. He's always been self concious about his speech w/out his ci.
I'll keep everyone updated as news unfolds, we are hoping by our Tues. visit w/the surgeon, the redness will have cleared again...but we are still trying to remain realistic. He already knows what it's like to not hear, he just has to learn to be satisfied with not hearing....at least for a while. More later...and thank you all for well wishes, crossed fingers, and prayers. Gage is a tough kid, he'll be very happy and successful no matter how this all unfolds, so no need to worry about him! I will add that last week (a couple of days before being admitted to the hospital for our five day stay), he turned into this touchy feely kid. He even would say the word "touch, touch" as he entered a new room, walking around making sure he touched everything! He would question me throughout the day "how does that feel?" or "But what does it feel like?" I assumed his body/mind was preparing him for what may be in his future.

18 comments:

Laura's medical journey said...

aw bless him! I know the one thing i missed when i lost my ci was hearing my families voices and music too! My family always reassured me i would get another one so i was always happy! i got thrugh school with the help of deaf teachers. I got by with writing notes on pieces of paper to who ever i wanted to talk to and text etc. IF the possibily he loses the ci, theres always another chance so that should make him happy! Even though you have to endure a few months of silence! But its possible to get through it! Hopefully i dont want him to go through all the exploratory ops that i had because it will just end in the same possibility of it been taken out! Do what you think is right for him! Glad hes ok for now despite the hospital trip!

Tiffani Hill-Patterson said...

Val, this makes me want to cry because I know how much he'll miss his AC/DC! Hang in there! I'm saying prayers and thinking good thoughts for y'all.

I'm amazed at what a tough boy you have and what a strong mom you are.

Hugs!

Kel said...

Ugh!! I am so sorry he is running into this infection problem and potentially facing a removal. That just sucks :( I love how you handled the music thing though, that is a wonderful spin to take on it. I hope that by Tues all is cleared up and looking great!

Naomi said...

hmmm thinking of you guys. So is the delay on reimplantation on account of wanting to be sure he is in the clear completely or just surgical issues. If it is the latter, I reckon is kick a*** mom might be able to swing something a little sooner : - )

(word verification "oozeri" now that is a little weird!!

Val said...

a reimplant delay to make sure the infection is clear...we need to clear that first...the bilateral delay...we haven't even started the process, we missed our "beginning stages" appt this week due to the hosp stay. So it could be that he got a new ear before the reimplant....? still hoping the iv works!

Jodi Cutler Del Dottore said...

**** Jodi
PS. I'll be back with encouraging message, but this is all I can manage right now.

leahlefler said...

Goodness, that is one stubborn infection. It breaks my heart that he wanted more IV's put in to save his CI. What a brave and sweet boy! I'm still praying that the infection clears, and that if it doesn't then I'm praying that his bilateral proceeds extra quickly.

Melanie said...

Sending good vibes your way.

MKChaikof said...

I'm so sorry to hear it's red again. Is there any chance they haven't tried the strongest antibiotic yet?

Loudest Mom said...

Val-

This post just got to me.....thanks for making me cry. I'm going to send all the positive thoughts I can gather your direction to save the implant. But, if it does need to be replaced, you're right, he'll be just fine. I love the fact that he is worried about his Rs :) I'll think of you guys everytime "Back in Black" is on.....


Hang in there !
Melissa

mishkazena said...

What a brave boy Gage is!

The fact that he wants more IVs installed is a testimony how much he treasures his C.I..

Yes, I've asked many people who have lost their hearing what they missed the most. Almost all responded music.

tammy said...

You both are amazing! Gage's strength and courage shows all you have taught him and what an amazing mom you've been to him! Thinking of you all and hoping for the best! We will definitely jam some good tunes for Gage this weekend! (and I have to try the rap thing with Aiden!)
Lots of thoughts & prayers,
Tammy

Li-Li's Mom said...

Oh my gosh, just catching up on what you all are dealing with and missing half of it all for the tears -- both for what Gage is going through and afraid of losing and for the bravery you all are showing.

I just want you to know we are thinking lots of good thoughts for you. I'm sure it will work out just fine, hang in there in the meantime and keep those woofers thumping and the rafters rocking at home.

Rachel @ Cochlear Implant Online said...

Hi Val, I just saw this post, and I'm seriously almost crying. As someone who has gone through two implant failures, I can completely understand how Gage feels. I sure did miss listening to music greatly when I went without hearing for a few weeks.

At least he's a candidate for a second implant, and I hope that his second implantation will go well.

I'll be thinking about you...

Candy said...

Aww, this touched my heart big time! I'm going to think good thoughts for Gage. You're a great mom, for being upfront and honest with him. Anyway, I wish I had a mom growing up that would play AC/DC! Not. :)

Hang in there...

Paula Rosenthal said...

Val, my heart goes out to you and Gage. This must be such a difficult time. Please know that you are both in my thoughts and that I hope that his infection heals really soon and you can progress from there.

Anonymous said...

Just tell Gage that he is not alone. We have all the IVs when it is necessary.

As for "R" in tongue, just tell him that I could *not* speak in weird langauge such as farsi, spanish and many more! ;-)

Hope Gage feels better!

White Ghost

Nathalie said...

Hi - I am so happy I found your posting, as we have been dealing with the same problems. My 2.5yrs old son has been battling an infection for past 2 months after the 2nd CI was done. We've been in hospital several times and on 2 PICC lines. Our lives and everything we do have been revolving around saving this implant, unfortunately we've lost the battle. Today the CI is coming out and we hope that our doctors are right in hoping we can try to re-implant in 6 months. Our confort at this point is that the 1st implant is working very well. Does your son only have 1 implant? Would he be a candidate for implant in the other ear? I wish you all the best and hope that you are able to find a solution, if not immediately in the longer term. Good luck, I'll be thinking of you and your family.