"Everyone needs a place to call their own"

Thursday, January 14, 2010

This Could be the Piece that Fits....

I got a call yesterday as I expected from Ayla's GI Dr's @ Shand's. The nurse called to of course give me the results of Ayla's C-diff test (which I already had because I have found a way to find out before they do...sneaky-sneaky). And to also get an update on how she's been doing so they can get an idea of what to do about this now.
I went on to tell the nurse how great Ayla has been, and how she's eating so well and almost completely symptom free. She took the info and said she would be getting back to me after getting with the Dr's.
A little while went by and the phone rang, it was the nurse again. She told me how happy the Dr's were to hear of her improvement. They didn't want to change anything as of now since she's doing so great.
Then the nurse went on to say something that sent my mind into a whirlwind....
"The Dr's think Ayla might be a carrier for C-difficile"
Questions just started pouring out of my mouth....."What does that mean?" "Does that mean she will carry this forever?" "Is this a good thing or a bad thing?"
The nurse stopped me fairly quickly and said she had all these same questions. But of course that statement had been trickled down from person to person until it got to me and she was not the one who could answer my new list of questions.
So she said that I needed to call if Ayla's condition changed and that they would be getting back with me in about a week.
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So having all this new information I am just thinking all kinds of things...Like:
What if all of Ayla's time she spent in hospitals her first few months of life is to blame for this? What if she picked this up then...and has been a carrier ever since!
What if all these antibiotics have not helped the situation at all but made it worse?
Why hasn't anyone in our family picked this up from her?

After I got off the phone with the nurse I immediately got online to google: C-Diff carrier..
(which is probably the worst thing you can do, but that's never stopped me before)
And I found some major food-for-thought.....more like a feast-for-thought....

There had been lots of trials done on animals and people to test this very thing. In some of the cases I read..the subjects who tested positive for C-diff but showed no symptoms were put into an environment with subjects who didn't have c-diff and it was found that they DID NOT infect the other subjects in the group! And when they were administered antibiotics like (vancomyacin & Flagile-the same ones they've tried on Ayla) the state of their dormant c-diff became enflamed and enraged.
*I also found that 70% of infants and children who test positive for C-diff will become carriers for a period of time*

And thinking back Ayla was having the worst symptoms of C-diff when she was being treated for it.
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So taking all of that into consideration...that's now got me thinking that Ayla's greasy-unformed BM's and her bloated belly...could have been her diet all along! Since we have seen great improvement (almost 100%) in those areas.
After all, the continuing presence of those 3 things is what prompted me to push for a stool sample in the first place.
And having that test done was the only way we would have known she had C-diff. So she very well could be a carrier for a dormant state of C-diff and has been since her very first hospital stays. Which would explain why she has not infected anyone else who's been in contact with her.
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I think I have a degree in medicine after this post :LOL

Her Dr's are not going to know what hit them when I come in talking about the research I've done.

So In a way this has got me feeling a little better about this situation. Knowing that it's common for children who acquire this bug hold tight to it for a long time without become ill from it. And that her symptoms could have been from something so easy to change...diet!
I feel sad that she could have picked this up so long ago in a place that's supposed to be safe and can often times be more dangerous than the reason that brought you there....a hospital...
And I even let myself feel a little sorry for her that she could be a "carrier" for something besides CF.

I feel very grateful that we are dealing with the strongest baby girl in the world, who is dealing with so much going on inside her little body and never acts like a thing is wrong. How blessed are we?

But we will find out more next week about what her Dr's "officially" think..and get a face to face with them in February to get the whole story.

Until then,






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