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So What is Going On???

Posted Dec 20 2008 7:17pm
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 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 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.
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