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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.



Friday, March 6, 2009

Day +260

This morning started off with the nurse telling me that Alicia's cultures have came back and they are positive for gram neg rods. They are not sure exactly which bacteria is in her blood stream but that should be determined soon. She will continue on all three anti biotics until the bacteria has been identified.


Doctor Davies came to see us and assured me that the situation with the unlocked nurse server is being addressed. She also told our social worker not to change our flight and that she did not want to make any decisions til Monday. She said if the bacteria can be cleared without have to pull her mediport than we would still be going home and I could give Alicia the antibiotic at home. She said if it was a type of bacteria that required having to pull her line to clear the system than she would make sure it was done early nest week and this would mean we could go home the following week. First and most important is that all cultures must come back negative which they are taking daily.


I am so glad that this all happened before we left. First of all it has opened my eyes. I have thought about this all night and I am convinced if we were already discharged the outcome would of not been good. Alicia reacted so fast and it was very serious. I realize now that I can never be to aware. Who knows if she has done this before. This could very well explain the last line infection. When we return home all medical supplies will be locked up and Bubba and Theo had to say good bye. Alicia has seen and learned to much while she has been here so long. She just did to herself what she has seen the nurses do many many times. She even scrubbed her line first. I am sure the scrub was not sterile as well as the sprite and syringes but I can laugh about it now. She had played doctor and put water in Bubba's and Theo's lines so many times but I never even gave it a thought that she would do it to herself. This could of taken my baby's life!!!!!!!!!!!!!


I will update more as soon as I hear. Thank you for so much support and Please keep Alicia in your prayers.


P.S After I posted this I did some thinking and I thought a lot of what Charisse left wrote in her post and Alicia and I had a talk and we decided it would be cool if Theo could still come visit, but now he can come and every night and watch a movie and have popcorn and they could color together. This made Alicia very Happy. The bond between this puppet and Alicia is very strong and Theo has been there foe Alicia through most of her difficult times through this journey and I decided it was not fair to break that bond.

2 comments:

Anonymous said...

OH MY!!!! I missed the post from yesterday! I can't believe it!!!!!!!!!! Thanking the Lord that He spared her life and that you got in there when you did!
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Romans 6:23 For the wages of sin is death; but the gift of God is eternal life through Jesus Christ our Lord.
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Charisse said...

Bless you, Michelle. I am so glad that you and Alicia had a chat and that Theo can come visit for a movie. How exciting for him to come and play. I completely understand the seriousness of this all. Have you spoken much with the hospital over all of this? You are SO brave and are taken great precautions to keep Alicia safe. Still praying.
Love Charisse