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Tuesday, March 6, 2012

Ayla Update: Crackles, blockage, Cdiff =CF Sucks

Ayla had tested positive for c-diff a couple of weeks ago got on Flagile and once she was off tested negative.  We were happy that the meds worked but remained skeptical since she has gotten in back pretty quickly in the past.
She got on Augmentin pretty soon after finishing the Cdiff meds for a cold and upon finishing those, cdiff symptoms seemed to return or "flare up."
With her cold she had a "dry cough" that seemed to hang around and as of sunday turned into a phlegmy cough.
So considering the stomach pains accompanied by oily frequent stooling and the cough I decided a trip to clinic was imperative.
Upon arrival her weight was down a little (never a good sign for a CF'er) she ordered a throat culture which we always get at clinic.  Talked for what seemed like forever about Ayla and her behavior.  We talked about Cdiff and the bronch that we have been unable to get done since she can't stay off antibiotics for long enough lately....and of course school (always doubting my decision to put her in).
She began examining her and heard a crackling in her lungs.  She has said she's heard this before but never seems concerned about.  Another CF mom on facebook said that her clinic takes this much more seriously and I will be asking some questions about this.  She also felt some "hard spots" when examining her tummy.  Ayla complained of pain when she touched certain areas so the Dr. ordered a xray of her abdomen.
We went over and my little "pooper-trooper" pooped on demand for me.  She has gotten rather good at doing this for all of the stool studies she has done.  Pretty sad but something I appreciate since we were able to drop that off while waiting for the xray to be done.
She had her xray and we got back in the car to head home after a 3.5 hour appointment. Before we got on the interstate the Dr had called me with disturbing news about her xray. She said she had a TON of pooped in there.  She said she had a lot of gas on one side (explaining her tenderness) and she was worried about her colon on that side (whatever that means) When things like this go on it makes me realize how much I need to educate myself.  She was worried about blockages and wanted her to do an adult dose of Miralax.
We did that at 7pm last night and it's 8:40 am and no poop yet.  She is looking for her to have a large stool and then we have to go get another xray to see if it all came out.  If not we are going to be admitted to get her cleaned out.
Then the next decision I will have to make is where to take her.  Shands vs Nemour's.  Since we have GI at shands and CF at Nemour's it's not an easy decision.  Although this is not liver related I still prefer shands GI to Nemour's team.  But Nemour's CF team I have been happy with.  I always get excellent care when we go to Shand's so that will be just weighing which specialty is more important to care for at that moment.  Since her culture could come back and show something she needs IV antibiotics for we need to be thinking about that.  Not that Shand's CF team is not the best of the best but let's be real being an hour from home vs four hours from home is a real concern.
Some concerns of mine:
My husband owns his own business and if he doesn't work we don't get paid
I am nursing Autumn and am basically a control freak about Ayla's care and want to be the one who never sees sunshine until she does when hospitalized and that won't be possible since we can't all stay with her.
How will I do that will Autumn and Nursing? Will there be someone who can help me? Ayla can not be left alone?

Hopefully.....none of these worries will be necessary....we will see what today holds....Ayla is complaining of her tummy hurting this morning and Dr. said that isn't a good sign....

Details to come -prayers appreciated....

6 comments:

  1. Sending up loads of prayers for you guys! Hopefully the Miralax has taken affect and she's gotten cleaned out on her own :( Our dr.'s have always said Miralax could take a couple days....have they given you a timeframe before they want you to bring her in? So sorry you're having to battle this stress :(

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  2. So sorry to hear of your recent stresses. I hope that the fix for Ayla is an easy one. I'll definitely send some prayers your way!

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  3. Will be praying for all of this! We use Miralax sometimes with Jack (with the recent potty trainig we were using it almost every other day) and it does seem to work slow but gentle so I will pray that it works on its own.

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  4. such a bummer!! thinking of you...

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