I JUST LEARNED AN HOUR AGO THAT ALICIA WILL BE GOING TO SURGERY LATER THIS EVENING OR FIRST THING IN THE MORNING TO HAVE HER CENTRAL LINE REMOVED. THEY ARE GOING TO PUT IN THREE TEMP REGULAR IV'S AND WAIT 24 HOURS AND THEN PUT PIC LINES IN EACH ARM. THIS WILL LET THE ANTIBIOTIC HOPEFULLY TAKE OVER AND GRET RID OF THE BACTERIA IN HER BLOOD STREAM. THEY SAID THE KIND OF BACTERIA IT IS IT WILL JUST STICK TO HER C-LINE INSIDE OF HER. THEY MADE HER NPO SINCE THIS MORNING BUT SHE IS NOT EATING ANY WAY.
SHE FINALLY BROKE HER FEVER AROUND 5 AM AND HER HEART RATE WENT DOWN SOON AFTER THAT. THEY WANT TO WAIT TO MAKE SURE SHE IS STABLE WITH HER VITALS BEFORE SHE IS TAKEN TO SURGERY.
HER RASH HAS ALSO GOTTEN HORRIBLE. THEY SAID THEY ARE MORE THAN CERTAIN NOW THAT IT IS ALSO GVHD. BOY AM I FOREVER TIRED. THEY HAVE ONCE AGAIN RAISED HER STEROIDS, (O BOY THAT IS NOT WHAT HER LITTLE ATTITUDE NEEDS )
ONE GOOD THING IS WE DID FIND OUT THAT SHE IS 100% DONOR WHICH MADE ME VERY HAPPY. HER COUNTS ARE ALSO VERY VERY GOOD. HER WBC IS AT 8.1. HBG 9 ( SHICH THEY DID GIVE HER RED CELLS THIS MORNING FOR THE SURGERY ) AND HER ANC IS AT 5.96. HER PLATELETS ARE AT 160 BUT SHE DID GET THOSE YESTERDAY SINCE THEY WERE DOWN TO 10.
I AM SOOOOOOOOOOOOO READY FOR MER MOMMY AND DADDY TO GET HER. I NEED REST VERY BAD. THIS IS WEARING ON ME SO FAST. I JUST WANT MY BABY TO GET BETTER.
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, August 15, 2008
DAY +57
Posted by Michelle at 9:46 AM
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3 comments:
That's a relief that it looks like they can clear up the infection. Her counts (except platelets) look really good! She has a really good ANC. I'm amazed! Yay on the 100% donor cells!! grrr...the GVHD stuff is a real pain to say the least. That is one of the things I dread the most about transplants, and it's no fun that our little Alicia is dealing with so much of it! I hope they are able to get that under control and that she can feel better soon.
You are doing an AWESOME job. I know you have to be exhausted both physically and emotionally... Hang in there and hopefully relief will be in soon. I wish we could come and help.
Hugs,
Teresa
100% donor...that is fabulous!!!
Michelle, hang in there. I know you are tired, you are doing a fantastic job! cznnd
What great counts. I like the ANC. It would be nice to have a high ANC. That is great that her donor cells are 100%. I am so sorry you are really tired. Of course you would be. It is a never ending roller coaster ride but you are doing really well in plodding on and so is Alicia. Praying for the operation. Praying the bacteria will go away with no extra problems.
Love Charisse
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