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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.



Wednesday, February 18, 2009

Day +245 New Port



Another long day!!!!!!!!!!!!!!! First of all Alicia is doing fine. She went down to the OR around 1pm to get her Mediport. She did a really good job and she wasn't scared at all until the Doc put the new NG tube she was getting on the bed beside her and she started crying. I was like HELLO can you please put that away so she can't see it. Here is a picture of Alicia going down to the OR......

Off to the or she went and to the waiting room I went. They had told me it wouldn't be that long and after an hour and a half I began to worry. Finally the doc came out and told me every thing went fine, they just had a hard time finding a place to put it since she is so small and has NO fat tissue at all. He said the port was going to be very noticeable due to the both of those. He then went to tell me that it might take her a little longer to wake up because in the middle of the procedure Alicia decided to wake up. I WAS LIKE WHAT IN THE WORLD!!!!!!!!!!!!!! I wanted to know right away if she would remember any of it and how it happened. He said they had a hard time putting her to sleep and had used the max amount of sedation for her size and weight but they had to give her more in the middle.
Alicia seems to be ok and she is not in any pain as I can tell right now. She is very proud of her New Line and even called Ne Ne and Mommy from the recovery room to tell them about it. Here are some pictures of her new port.............................


We are still on schedule to be discharged tomorrow which couldn't be soon enough. I am soooooooooooo ready to take her out of here!!!!!!!!!!!!!!!!!!! If plans go as expected we will see Doc Davies on Friday and get the exact date as to when we will be on the plane to HOME!!!!!!!!!! Our social worker is working on getting us a flight but no luck yet. I also have to figure out how I am going to get everything back to Kansas. We came with two suit cases and one baby doll and now we have soooooo much stuff since we have been her for nine months.
Thank you everyone for the prayers being said for Alicia. Hopefully we will get to go home soon.

4 comments:

Anonymous said...

Hope you're sprung tomorrow!
Know that I'm here praying!
Isaiah 43:1-3a But now thus saith the LORD that created thee, O Jacob, and he that formed thee, O Israel, Fear not: for I have redeemed thee, I have called thee by thy name; thou art mine. When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee: when thou walkest through the fire, thou shalt not be burned; neither shall the flame kindle upon thee. For I am the LORD thy God, the Holy One of Israel, thy Saviour...
Prayer Bears
My email address

Anonymous said...

Sending lots of love...Thanks for the update. Dianne

Charisse said...

The new port looks good. I didn't realise that Alicia still had a NG tube in. Shame, they should not have put it where she could see it. I pray you are let out to go home!
Love Charisse

Mary Ann Fiaschetti said...

Michelle,
Alicia just makes me laugh! What a gift she is. Bubba was a very appropriate name for her new big orange friend! Hope you know we are sending hugs and prayers!! So glad home is on the horizon. Yippee.
Love, the Fiaschetti FAmily