July 12, 2011

My Roller Coaster



Early tomorrow morning (Wednesday) my sweet girl and I will be heading down to the hospital for some additional tests. Annabelle will be having a pH monitoring test - pH is a measure of the acidity or alkalinity of a solution. The Dr. will place a small catheter through her nose and into the throat and esophagus. Here, sensors will detect acid and a small computer worn will record findings during a 24-hour period. The Dr. is doing this test to determine if her continued lack of eating is due to her possibly having acid reflux, specifically Laryngopharyngeal Reflux (aka Silent Reflux). Click HERE if you would like to read more about it.

I don't anticipate that it will be painful, but a bit uncomfortable I'm sure. I am praying she won't pull it out of her nose. She has been SUPER feisty lately. I think someone is going to be two very soon! Her new favorite word is NO!

The Dr. will also be replacing her current G-tube Mic-key button with a new Mini button. Ahh, so cute Mickey & Mini! Just kidding. Apparently this new button will be lower profile on her belly, cut down on granulation tissue growth (thank you!) and have much less leaking! Yeah, it sounds like exactly what we need. It just makes me wonder WHY we didn't get this one in the first place? Oh well, we are getting it now and I'm thankful for that. The leaking is driving me CRAZY! If for some odd reason you want to read more about the mini g-tube button click HERE.

So, needless to say I am feeling a bit anxious tonight. After all of those past hospital stays, I just really dread going to the hospital even when I know in my head tomorrow isn't going to be that bad at all. So, if you can, please keep me and my sweetie girl in your hearts tomorrow. We are praying for a smooth procedure that will produce conclusive results that will point us in the right direction. If she indeed has reflux than we can start a medicine and hopefully get her eating. If she doesn't have it than we can cross that off the list and continue to try and figure out why my girl doesn't love food as much as he mommy and daddy does :-)

Yes, my life is a bit like a roller coaster ride most weeks but it's my roller coaster and with a wonderful daughter like Annabelle how can I not enjoy the ride! Thanks for coming along - we enjoy company!

12 comments:

  1. I will keep you in my thoughts and prayers tomorrow, Nicole. Much love to you both. Love from,
    Greta

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  2. I met Mingie when my daughter was in the PICU having her shunt replaced. She was born prematurely. She has CP and hydrocephalus. She is 15 now. She had a gtube and mic button. I remember all the leaking issues. I am so glad that they have made something better. My daughter also had all the tests for reflux. She was actually the first child to have this kind of testing at CHOC. All this to say I understand the roller coaster ride. If you ever need to talk please email me and I would be glad to meet you, have a diet coke and talk. Here is my email mltx2@sbcglobal.net. I'll praying for all that is happening tomorrow.

    Mary Thompson

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  3. We will be thinking about you tomorrow. We'll be at CHLA for Michael's routine MRI check tomorrow. Hospital Wednesday it is :) Love and hugs to you both! See you very soon...

    Colleen

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  4. Praying for a smooth day today. I'm sure Annabelle will keep smiling that gorgeous smile, which will make your day much easier!

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  5. Aww. I love that picture! Prayers that she can contain her "fiesty-ness" and behave for 24hrs lol. I'm not sure I could...but if anyone is capable it's sweet Belle. :) Praying for you honey.

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  6. Good Luck today!
    Love that new picture! Sounds like a good plan for the day (even if it's still nerve wracking being in the hospital). And hope for some answers soon!
    Amanda (and Nick)

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  7. Evan also had a ph test which is how his reflux was diagnosed. He also has a mini and we haven't had any problems with it. Hope all goes well. Hugs friend!

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  8. How long will it take to get the findings as to whether she has AR or not? Please keep us updated on sweet Annabelle and what they find!

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  9. Good luck to you both. :) Sending prayers your way.
    Angie

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  10. Thinking of you guys today and hoping you get some clear results. All our kiddos are growing up so fast-I can't believe she is almost two! Hugs!

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  11. We've done that testing...prayers for you all! My son had SEVERE reflux and once starting Nexium, he started feeling much better! (He also HAD a g-tube.)

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