Thursday, April 16, 2009

"I can call you Betty, and Betty when you call me, you can call me Al(agille)"

Olivia has had a really good day. They stopped her Morphine infusion early this morning because she was having too much fun being gorked out of her mind and forgetting to breathe for herself. Once they stopped the Morphine drip, within 6 hours she was breathing on her own and was awake enough to be taken off the ventilator. So our little peanut sounds like a smoker again -- her cough is more like a 1/2 pack smoker this time :)

Dr. Lopez from the GI team did stop by and talk
 to Sara and her mother while I was working today. He was "comfortable" with a diagnosis of Alagille Syndrome with our little Diva. The biopsies that were taken during surgery will most likely confirm the Doctor's suspicions. This Syndrome/Disease is mainly a management disease. We will need to find ways to support her Liver with food, supplements, & medications, there is no cure besides a Liver transplant. Dr. Lopez also stressed that the healthier we can keep her heart, the healthier her liver will be. Hopefully I will get a chance to talk to him sometime before discharge to get some more specific quesrtions answered. 

I'll Post some more on Alagille this evening.
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4 comments:

  1. UnknownApril 16, 2009 at 4:47 PM

    Glad to know that she is recovering nicely.Prayers continue for all of you.

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  2. UnknownApril 16, 2009 at 7:43 PM

    Lil Peanut did have a good day then. Thats a lovely photo. Glad there is no not good news for her. Continue to send Lil Peanut prayers for recovery time.

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  3. Laura VanOrsdalApril 16, 2009 at 9:02 PM

    Now I'm going to have that song in my head all night!!! :-) I'm glad to hear she is recovering well. It will be a relief to have a diagnosis -you'll know what to do to manage it. No more guessing and hopefully no more exploratory surgeries. Poor little thing - she is going to have some real stories for show and tell when she is in school!

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  4. RachelApril 16, 2009 at 9:46 PM

    Possibilities of a liver transplant? Whats required of that? Glad that you all finally have some answers. Come home little one, keep up the good fight...and no more smoking! ;) Ben and Sara you are in my thoughts daily...best wishes to you and I hope to see all 3 of you soon. May Olivia have a fast and eventless recovery! Peace and Love to you all...

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