Well the third time is not a charm for us!!!!! I just got a visit from Alicia's Head Nurse and we are not going home once again. She came to tell me that they are concerned because her Liver Enzyme numbers have more than tripled . They believe it is caused by a type of medicine called Voriconizole, it is an anti-fungal med. They have stopped that med and are starting her back on Amlodioine which is supposed to protect her Liver. If the numbers go down than they wil start her on a different type of anti-fungal. So the end result is we are not leaving tomorrow. I can not do anything but laugh. I was not shocked one bit!!!!!!!!!
She does seem to be feeling alot better. She didn't eat much yesterday but today has started off a little better. She is giving Theo his meds right now. Poor Theo gets more meds than Alicia does.
There are more doctors tht just walked in so I will update as soon as I know anything else. Just another day at CCMCH
ALICIA'S JOURNEY WITH FA
Welcome to our blog where we try to keep family & friends updated on our daughter/granddaughter, Alicia, who is one of the most adorable five year olds ever! She was born with a very rare & aggressive disease, called Fanconi anemia, which causes bone marrow failure, as well as different cancers . She is currently undergoing a bone marrow transplant to try to cure her bone marrow issues. If you'd like to gain a little more background, please visit our first entry HERE.
Tuesday, September 9, 2008
Day +83
Posted by Michelle at 2:26 PM
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5 comments:
I am sorry to hear third time WAS NOT a charm. I smile when I think of Alicia giving Leon his meds. I think she will be a nurse someday!! :)
Love, Dianne
Sorry to hear that you won't be getting discharged again. Antifungals are broken down by the liver. I hope things settle down as they have now taken her off this drug :-)
Love Charisse
Oh I'm sorry!!!!!!!!!!!!!
Look to the Lord your only true refuge in every time of need! Praying!
Psalms 91:9-12 Because thou hast made the LORD, which is my refuge, even the most High, thy habitation; There shall no evil befall thee, neither shall any plague come nigh thy dwelling. For he shall give his angels charge over thee, to keep thee in all thy ways. They shall bear thee up in their hands, lest thou dash thy foot against a stone.
Prayer Bears
Michelle,
I'm going to have faith that He knows why the third time was not the charm. This is frustrating to read how your charming, beautiful, fiesty granddaughter has to endure so much. We'll keep praying for her and you, and the rest of your family. Know that your FAmily loves and cares for all of you.
Hugs,
Mary Ann Fiaschetti
(Peter & Joey's Mom)
YIKES...Did I call Theo, Leon??! Please don't tell Alicia. She might be mad that I called her little buddy the wrong name! Hope you guys are having a good day. Dianne
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