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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, January 9, 2009

Day +204 update

Thanks Denise for the post. I am still very tired. It all started actually last night around 7pm. Everything went well yesterday during Alicia's clinic appointment. The only problem was with her BP being high and after giving her some meds they got it done to normal and sent us on our way. Alicia slept most of the afternoon and woke up with severe tummy pains and started vomiting. I took her temp and it was already up to 101.4 so we were about to experience our first visit to the ER which is a horror story by its self. We got there and within an hour her temp was up to 102 so they gave her an antibiotic called Zocin. After it was done being infused they check her BP and it started falling very fast. It got all the way down to 60/30 so they started pushing fluids in to her line and contacted the ICU. After about 600ml's of fluid and steroids they got her BP back up and gave her two more antibiotics. They said she has some obvious Bacteria growing some where because when the antibiotic went to the infection and killed it the effect was toxins being released inside her body which attacked her BP. Finally after hours the ICU decided she would be able to go to the BMT floor which I was so relieved. They took chest x-rays and took blood for cultures and after about 12 1/2 hours in the ER we were finally given a room on A5N. She is currently in room 504.


Dr Wally came in after we got here and said the x-ray showed she has pneumonia in both lungs. He listened and agreed with the rest of the Docs that her lungs sounded clear but the x-ray clearly shows it is there. He said we will be in the hospital for at least 3 weeks. He also said her WBC went from 13 yesterday morning to 38 last night in the ER which now they are very concerned about.


I am so emotionally drained. I am exhausted. Alicia and I both did not sleep a wink in the ER. They have been running tests all day so we have not got much sleep. Her cultures have not came back yet but when they do I will let everyone know what the results are. Denis will be here Monday for a week and that is the only thing that is keeping me going. I NEED REST!!!!!!!!!!!!!!


Please say an extra prayer tonight for Alicia and also Erika. Erika is soooo worried and wants to be here which we are trying to arrange. Thank you for all of your support.

3 comments:

Anonymous said...

I am glad to say that I was there to help you...and we even got a laugh this morning with the construction guy...lol, which you needed so it was okay. Alicia will be fine, I promise, atleast I'm here too...lol
Jennifer

Mary Ann Fiaschetti said...

Michelle,
I hope you and Alicia know that we are sending hugs and prayers your way. Her new blood will fight this infection. This is just a bump in the road on the journey home. Keep your chin up.
Love, the Fiaschetti FAmily

Teresa said...

You guys are in our prayers! Give Alicia a big hug for us...and I hope you can get some sleep. Hope things settle down and good news comes soon.