Wednesday, January 26, 2011

Where we are...

So, last night his head was itching severely before bed...I had a hard time falling asleep. I had hoped and felt sure, we would not see ANY signs of his returning infection but apparently...I can be wrong. We will keep him on the meds for now and if this continues, or if the swelling returns, or pain/tenderness returns, we will go ahead and schedule his removal. That's it, REMOVAL...notice I don't say revision or removal with intent to replace. Removal.

I have a fabulous nine year old boy who has been too many times to the O.R. in the last couple of years due to 'issues'. At this point, it is compromising his health, and hearing isn't worth this. So our fabulous doctor, surgeon, friend, called us today and gave us the news we kinda already knew. He's spoken with doctors all over the country and apparently, once a patient gets one of these rare staph infections, even with removal of infected device (various implants, pace makers, etc) the infection can hide out, hang around in soft tissue causing no problems then BAM, surface again once another foreign body is inserted. It seems like this might just continue to repeat itself so it'll have to find elsewhere to do so, not my child's head. I had already decided we would not re-implant should we need to remove this one-doctor agrees this is best-but he'll leave the array in for possible future reimplanting should he go years w/no problems and want to try it again. As for why it happened in the first place? Maybe his anomalies and birth defects have something to do with it, maybe not. No one is for certain why it happened to begin with. But here's what my child said when I repeated to him what his doctor said....

As he realizes it just doesn't seem fair..."So why can Brook hear better than me?" I know he really wants to know why everything happens to him, and she slides by with no problems. I respond, "Well, when your last implant quit working, it had nothing to do with your syndrome or you at all, it just quit working right. The infection may have developed because of your ears, I don't know, no one knows why it happened. But apparently it'll keep happening if it comes back after all this medicine. If this medicine don't work, we need to take it out! It's not worth keeping for you to keep having to take so much medicine and it's not worth keeping if you have to get it replaced every year. Enough is enough. You other implant is fine for now and you'll still be able to hear a little bit with that one. But Dr. W will take care of you and we want you to be safe and healthy so that's why you need to keep taking the medicine for now, but at any time it hurts you or you feel like the itching is too bad, we'll go ahead and remove it." And all he can do is shake his head in agreement and say "Okay. Brook let's go outside and play football."
...and that my friends, is where we are.

6 comments:

leah said...

Val, my heart goes out to both of you right now. Health is definitely the most important thing, and hopefully Gage will compensate by using his other ear. *Hugs* to you (and prayers)!

ann said...

My sweet gage. I think that you are doing the right thing. It can't be a good thing for him to take so much medicine and have his head operated on so many times.He is young now(but very wise) and will understand better as he gets older.Brook and Gage have different problems and he will understand someday.You have to what is best for each of them. I love all three of you. Mother

tammy said...

I have been thinking about you all so much lately and my heart goes out to you all. Gage is one tough cookie and I just love his attitude through it all. Poor guy, it SUCKS what he's been having to go through. Bless his heart.
Hope you are hanging in there as best as you can. Hugs and prayers.

rouchi said...

My heart goes out to this little boy and you who has such a strong heart inside her chest!I really pray for you both and don't know what more to say.......God bless both of you.

Nicole said...

Praying for you guys.

Jennifer said...

Val, I have been out of the loop here and just am getting caught up. I am so sorry for Gage (and you). It must be so difficult for him. How does he do with one? I know it's always better with two but lots of people do amazing with one. And knowing Gage, he is one of them. Lots of hugs and prayers from our hours to yours.