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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.



Monday, September 13, 2010

3infections later

The Mri went good and they found access for another picc in her right arm. The MRI also showed a lesion on her 7the right rib but the docs don't seem to worried. They are just goning to keep a close eye on it and do more frequent scans. I am worried though so it definitely wont be put on the back burner.

In the mean time all of her cultures are coming back positve for gram pos rods. They ha vent identified the type of bug it is yet but the 5th 6th 7th 8th and 9th are positive.  Her central line was pulled on the ninth and replaced with the picc  So far all cultures from the picc are negative. I pray they stay that way or the picc comes out also.

Her spirits are pretty good as long as I have spaghetti for her. I am on my third batch. I have to go to the RMH and cook it, she does not like the one on the menu. She also gets pretty mad if any calls her Alicia, she isw now Princess and she will not answer to anything but Princess. That is something my mom started and NeNe and it has went way overboard. O well if thats what makes her happy.

We will probably be inpatient another two weeks and then out patient A couple of weeks also. I JUST WANT TO GO HOME!!!!!!!!!!!

She misses Mommy and Daddy real bad. She talks to them every night from her cell phone. YES she has a cell phone. NeNE gets the worst of it though cause she calls her every morning when she wakes up and they are an hour ahead in Kansas.


So the plan for us is to hurry up and wait. Hopefully no more positive cultures come!!!!!!!

Mee-Ma

Monday, September 6, 2010

IN CINCINNATI ONCE AGAIN

I KNOW IT HAS BEEN A VERY VERY LONG TIME SINCE I UPDATED. THE SAYING IS THE FEWER THE UPDATES THE BETTER SHE IS. NOT IN OUR CASE.... WE HAVE BEEN IN THE HOSPITAL MOST OF THE PAST TWO MONTHS AND I DID NOT HAVE MY LAP TOP.


SHE WAS MED FLIGHTED YESTERDAY FROM WESLEY HOSPITAL BACK HOME AND WE ARE CURRENTLY IN CHILDREN'S IN CINCINNATI. WE ALREADY MISS THE NURSES FROM HOME, ALICIA WAS FINALLY STARTING TO BE NICE. WE ALSO HAVE VERY GOOD NURSES HERE, AND ALICIA IS VERY WELL KNOWN.


ANYWAY THE REASON FOR BEING MED FLIGHTED IS DUE TO ANOTHER LIN INFECTION. THIS TIME IT IS YEAST, WHICH I HEARD IT IS NOT EASY TO GET RID OF. THIS IS THE SECOND INFECTION SINCE THIS LINE WAS PLACED. THE SURGEON WHO PLACED THIS LINE SAID IT WOULD BE NEXT TO IMPOSSIBLE TO PLACE ANOTHER ONE  BECAUSE ALICIA'S MAIN ARTERIES ARE COLLAPSED. SO RIGHT NOW THE BMT DOCS AND SURGEONS ARE FIGHTING OVER IF IT SHOULD BE PULLED OR TRY TO SAVE IT. YEAST IS VERY HARD TO GET RID OF AND STICKS TO LINES. IF THE LINE IS PULLED THERE IS A CHANCE THAT ANOTHER ONE COULD NOT BE PLACED AND SHE WOULD LOOSE ALL ACCESS AND THAT IS NOT GOOD.


THE PLAN NOW IS TO DO AN MRI IN THE MORNING TO LOOK AT HER VEINS AND SEE IF THEY WOULD BE ABLE TO REPLACE IT. IN THE MEANTIME THE ARE RAISING THE DOSE OF ANTI FUNGAL GOING THROUGH HER LINE IN HOPES TO FIGHT THE BACTERIA.


I AM NOT SURE HOW LONG WE WILL BE HERE THIS TIME BUT IT SOUNDS LIKE IT MIGHT BE A WHILE. I PROMISE TO UPDATE WITH ANY NEW PLANS.

MEEMA