The Mystery continues...

We are going back to Gainesville Tuesday morning for appointments Wednesday. And I'm hoping once again that they will have some new idea of what's going on with Ayla.

It seems like since we had our run-in with the ER a few days ago her belly has been tore-up! She is going to the bathroom A-LOT and most of the time can't hold it until she makes it. Her poor "pootie" (as Ayla calls it) is raw from going so much.

My theory is that shot of antibiotics she got from the ER (that we should have never had to go to) caused a relapse of C-Difficile! C-diff is often times caused by antibiotics. I am hoping that's not the case of course. Because we had such a hard time getting rid of it.

But I am just so OVER all these GI issues with Ayla, it seems like one thing gets better to make way for another. We have adjusted enzymes till we're blue in the face and that's obviously not the problem.

I stopped giving her dairy because I was convinced she was Lactose Intolerant and now the same symptoms are showing up anyways.

So I am at the end of my rope with all this, I have been keeping a food & poop diary for her so I hope that helps when we see the Dr's.

I just want her tummy to stop hurting~ it's literally been months of this.

And mommy is DONE!

Please pray that this appointment will go well, and that we will leave there with a plan that works for Ayla!

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,

The Saga continues...to Shands we go!

Well...Well....Well....what do you know....Ayla was positive for c-diff AGAIN!
I took her to the Dr Tuesday because I have not been seeing the improvements I should. The Dr. was pleased that she hadn't lost any weight. And went on to say that he thinks that we need to re-evaluate the plan of action here. (AMEN!) We have been treating this and nothing is working. The meds they had her on apparently are very strong and should not be used for a lengthy time period. He wanted to talk to the Dr's @ Shands about this.

In the mean time we would do another stool sample..results are above.

So on Tuesday afternoon I get a call from the Dr's at Shands and they would like to see Ayla on Monday. Yes...that's 3 days before Christmas! My mom and I are going to drive down and possibly make the trip in one day.

Everyone involved thinks it's a good idea for us to get Ayla in front of these Dr's. Because she looks so good. She is not showing the normal symptoms of someone who has c-dff according to her pediatrician.

So now my mind is going a million miles a minute...doing research on what else could cause her loose, nasty, greasy stools and this belly pain. I am now forming a list of my own conclusions which could be:

1.) food allergies
2.) enzyme diagnosis
3.) over-abundance of fat in diet
4.) Lactose Intolerance

Our labs in this area are.....well...are not the most "Hi-tech" meaning when you get a stool study done for c-diff anywhere else..they test not only for the presence of the toxin...but the amount. Because in case you didn't know...you have c-diff toxin in your poop...(little nugget of information for you all). And the lab that I have had like 6 stool studies done at has been testing ONLY for the presence...NOT the amount!! Which is like....so stupid!!

So.....I am getting mentally prepared...packing my arsenal of questions...for this trip to Shands. I refuse to come home without a plan of action. Some kind of test to prove that plan will work. And something I can do for Ayla until that plans works.

Thank goodness for doctors, but thank goodness for mommies intuition. I know that I am lead to do the things I do for Ayla by god. It's a full-time job to be her mom....there's no title I'd rather have.....than...

AYLA'S-MOM
Nurse, nutritionist, mom,
cook, maid, stylist & friend...

Updates to come after visit with Shands. Please keep ayla in your prayers.

Love,

C-Diff: volume ____? to many to count...

I emailed Ayla's Dr today because I am concerned these meds she's been on aren't getting the job done.. I am about 90% sure that she would still test positive for C-difficile if tested today. Which makes me very sad. I was thinking about it last night and realized that we have been dealing with this bug since at LEAST September!

Her doctor emailed me back and is going to call in ANOTHER stool sample to be done. But I really have no doubt she still has it. She has been having the same or more belly pain here lately and her BM's are not formed and greasy (for the most part) -sorry for all of you who don't know but we CF'ers talk a lot about poop!

So I will probably get that together (polite words for collecting the sample) tomorrow and take it down to the lab and wait yet again for these results. I think this is the 6th time now that we have done this.

My question to her doctor was "what is the next step in getting rid of this" I mean we have tried 2 different methods now, CMON!

Ayla has been such a sport and still is the happiest child you'll ever see, but I feel so bad that she has had to deal with this all these months!

Please pray that whatever step needs to be taken to get rid of this C-diff (if we test positive) is the right one and that it will work for us!

I'll post an update after labs are done.

frustrated mama,

The Results are In.......

We have gotten the results and the test was.....NEGATIVE!!! I had been waiting for the phone call all day long. And the nurse called around 4:30 this afternoon.

Thanks to everyone for all the prayers and support. We are so blessed to know that we are past the worst part of this and we can be sure that Ayla is healing from this pesky-bug!

Thank-You Jesus for answering our prayers, and delivering Ayla from yet another battle.

Relieved-Mama,

It's A Dirty Job But Mommy's Gotta Do It!

Most of you know about Ayla's little bug we've been dealing with for about a month now. Of course we've really been dealing with it longer than that and didn't know it. But a month is about how long we have been treating it with meds.

I have been handling a lot of poop these days. I have to take a "specimen" into the lab every time they test her for C-difficile. This is about the 4th or 5th time I have done it now, so I am getting surprisingly good at it.

Tomorrow is the day that they want her stool tested to see if this bug is gone.

I am joking about the humorous parts of this saga, but that doesn't take away from the seriousness of it.

Please join with us in prayer and believe that her test will be NEGATIVE tomorrow. I am gathering the "specimen" next time she goes and plan to have it at the lab in the morning, so I can get results same day. I will be sure and blog about it then.

Thanks in advance for all the prayers.

Love,

Fingers Crossed...

One of the first posts I did was called: "C-difficult" and I explained about a bug that Ayla had been dealing with for about 6 weeks at the time. Since that post she has been on meds twice to get rid of it after testing positive for the bug again. On Saturday she finished the 2nd set of antibiotics and Larry and I are really seeing some good signs:

• She is averaging 2 BM's (poops) a day-before it was 4-10 /day


• Her Stools are hardly ever greasy anymore, this mornings was for the first time in 5 days


• She is complaining much less of belly pain (caused from trapped gas)
  
• She is having a lot more Gas, which is a good thing because things are moving through

So on Monday we will be going to the lab to do another stool study to see if this bug is gone after being off meds for a week. We are really praying that she will have beat this for good. I know that she is defying odds in so many other situations, so this one shouldn't be any different.
That's what we are expecting!

PRAYER REQUEST: Please say a prayer for Ayla to have a negative test result on Monday for C-diff

C-DIFFicult!!

For the last 3 months our daughter Ayla has been dealing with a lot of potty-problems. Because of Cystic Fibrosis a lot of the symptoms she has been experiencing can be mis-interpreted as effects of an incorrect enzyme dosage. I really have to stay on some of her Dr's because when you have a child with a chronic illness, sometimes problems aren't always explored to the fullest extent. So after a month and half of Ayla complaining of belly pain, very frequent daily diarrhea I called Shands GI (Ayla sees Dr's @Shands twice a year for Billiary Atresia). And they ordered a stool-study right away at my local lab. Low and behold that came back POSITIVE for C-diff. We went through a round of antibiotics and tested for it again and was NEGATIVE! So just to be sure we had killed the bug we did another stool-study after a week of no meds. And it cam back POSITIVE-again! So now we have her on a different antibiotic and are praying this is the last time we will have to deal with it.

The crazy thing is...most people get this from hospital stays or long periods of time using antibiotics...and Ayla was neither of those.

So please pray with us that the next stool study we have will be negative, and she will begin to feel better, and for the days of 10 BM's and whimpering from belly pain to be far behind us.