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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, July 28, 2008

DAY +39

I WANT TO START BY SAYING THANK YOU FROM THE BOTTOM OF MY HEART FOR ALL OF THE PRAYERS AND SUPPORT EVERYONE HAS BEEN GIVING US. I FINALLY GOT THE CHANCE TO LOG ON TO A COMPUTER THIS EVENING AND I STARTED CRYING LIKE A BABY WHEN I SEEN HOW MANY PEOPLE HAD LEFT MESSAGE'S AND PRAYERS FOR ALICIA AND MY FAMILY. I TRUELLY BELIEVE THAT ALL THE PRAYERS THAT WERE SAID IN THE PAST 24 HOURS WERE HEARD AND I THANK EVERYONE SO MUCH.

I WANT TO SAY A VERY VERY SPECIAL THANKS TO A VERY DEAR FRIEND, KRISSTINA. I WOULD NOT OF MADE IT THROUGH THIS WITHOUT YOU!!!!!!!! THANK YOU KRISSTINA FOR BEING THERE FOR ME. YOU ARE VERY SPECIAL TO ME AND I AM SOOOO THANKFUL TO HAVE YOU AS A FRIEND.

NOW WHERE TO START.................... LETS JUST SAY YESTERDAY WAS THE MOST SCARIEST SITUATION I HAVE EER BEEN IN OR HAD TO SEE ALICIA GO THROUGH EVER.

IT HAPPENED SOME TIME AROUND 10 AM. THE DOCTORS HAD JUST DID ROUNDS ON ALICIA AND EVERYTHING WAS FINE. AS SOON AS THE DOCS LEFT THE ROOM ALICIA SEEMED TO BE ACTING STRANGE TO ME AND IN A MATTER OF SECOND HER ENTIRE RIGHT SIDE OF HER BODY STARTED TWITCHING AND SHE WASN'T MAKING ANY SINCE IN WHAT SHE WAS SAYING. I YELLED AT THE DOCS WHO WERE STILL JUST OUTSIDE MY DOOR AND WHEN THEY WALKED IN ALICIA WAS IN A FULL BLOWN SIEZURE. WHEN SHE CAME OUT OF IT WHICH HAD LASTED AROUND 2 MINUTES, SHE COULD NOT MOVE HER WHOLD RIGHT SIDE OF HER BODY AND SHE WAS NOT REACTING TO ANYONE. HER RIGHT PUPIL WOULD NOT DIOLATE, AND SHE WAS IN LIKE A OUTER SPACE STAGE. SHE WAS JUST LOOKING IN THE AIR. I FELT LIKE MY HEART WAS COMING OUT OF MY CHEST, I HAD NEVER BEEN SO SCARED IN MY LIFE. I HAD TO GO IN THE HALL SO I COULD BREATHE. THAT IS WHEN I CALLED TINA AND SHE WAS HERE IN A MATTER OF MINUTES.

THEY RUSHED ALICIA TO CT DO DO A SCAN ON HER BRAIN AND WHEN WE WERE THERE SHE HAD TWO MORE SIEZURES, ONE LASTED OVER FIVE MINUTES. THEY GAVE HER SO MUCH ADAVAN IN CT THAT THEY RAN OUT AND HAD TO GET SOME FROM THE ER JUST TO TRANSPORT HER BACK TO HER ROOM. THEY SAID SHE HAD SO MUCH ADAVAN ( I AM PROBABLY SPELLING THAT WRONG) THAT IT WOULD OF KNOCKED ME OUT. WHEN WE MADE IT BACK TO THE ROOM IS ABOUT WHEN TINA GOT HERE AND ALICIA WAS STILL NOT MOVING ANYTHING ON HER RIGHT SIDE. SHE WAS VERY MUCH IN A DAZED STATE BUT SHE KNEW WHAT WAS GOING ON BECAUSE WHEN SHE SEEN TINA SHE SMILED ( AT LEAST THE LEFT SIDE SMILED). I FORGOT TO MENTION THAT AFTER HER FIRST SIEZURE HER OXYGEN LEVEL DROPPED VERY FAST. IT GOT DOWN IN THE LOW 70'S AND THE STARTED GIVING HER 100% OXYGEN.

AFTER ABOUT 30 MINUTES DR JORDAN CAME IN AND SAID THE CT SHOWED A SPOT ON THE LEFT SIDE OF HER BRAIN. HE SAID IT WAS LOCALIZED IN JUST ONE AREA AND THAT IT WAS NOT ALL OVER BUT THEY WERE ERY CONCERNED. HE NAMED OFF SEVERAL THINGS IT COILD BE BUT HE WANTED ALICIA TO BE MOVED TO THE ICU TO BE MONITORED UNTIL THEY HAD THE SIEZURES UNDER CONTROL WITH MEDICATION.

IN THE ICU THE GAVE HER A VERY LARGE AMOUNT OF DILATINE ( HOWEVER YOU SPELL IT) AND IT SEEMED TO STOP HER FROM SIEZING. SHE DID HAVE ONE MORE IN THE ICU BUT IT DID NOT LAST LONG.

HER LITTLE BODY WAS SO TIRED FOR ALL THE SIEZURES, THEY SAID IT TAKES ALOT OUT OF SOMEONE TO HAVE ONE. I JUST SAT AND WATCHED ALICIA LIKE A HAWK. BEFORE WE WENT TO ICU BOTH OF ALICIA'S PUPILS WERE NOT DIOLATING AND SHE COULD BARELY MOVE HER LEFT ARM EITHER BUT AROUND SEVEN LAST NIGHT ( I THINK) SHE STARTED GAINING A LITTLE USE EVEN ON HER RIGHT SIDE. I WAS SOOOOO HAPPY TO SEE THAT. I THOUGHT MY BABY WAS PARALIZED. IN THE ICU THEY ASKED HER WHAT MY NAME WAS AND SHE COULD NOT TELL THEM. I ABOUT LOST IT THEN ALSO UNTIL WHEN ALL OF THE NURSES WERE MESSING WITH HER I HEARD HER YELL MEE-MA. IT WAS THEN I KNEW SHE WAS GOING TO BE OK. SHE STARTED TALKING A LITTLE AFTER THAT BUT SHE WAS SLURRING ALOT. ALL I COULD UNDERSTAND WAS CANDY AND CHICKEN NUGGETS AND SHE SAID THAT ALL NIGHT. (AND YES SHE DID GET CHICKEN NUGGETS TODAY RIGHT WHEN WE GOT BACK TO THE FLOOR)

DOCTOR DAVIES CAME THIS MORNING AND SEEN US AND SHE WANTED TO PUT THE MRI OFF UNTIL TOMORROW MORNING, SHE THINKS THAT A MEDICINE CALLED CYCLOSPORIN COULD BE CAUSING THIS. IT IS A MED TAHT SUPPRESSES THE IMMUNE SYSTEM, AND IT WAS HELPING WITH THE GVH. SHE TOOK HER COMPLETELY OFF OF IT TODAY AND WANTS TO SEE IF THERE IS ANY CHANGE TOMORROW IN THE MRI WITH THAT. THEY ALSO DID A SPINAL TAP WHICH THE RESULTS CAME BACK GOOD.

WE SHOULD KNOW MORE TOMORROW AS TO WHAT IS GOING ON. I WILL LET EVERYONE KNOW WHEN I DO.

ERIKA HAD A VERY VERY VERY HARD TIME WITH THIS LAST NIGHT. SHE FELT LIKE SHE COULDN'T DO ANYTHING BECAUSE SHE IS SO FAR AWAY. BUT I KNOW SHE HAS 100% TRUST IN ME THAT I AM MAKING SURE ALICIA IS GETTING THE BEST CARE EVER AND SHE WILL BE HERE IN FOUR DAYS.

ALICIA IS SLEEPING NOW SO I BETTER DO THE SAME. I HAVE NOT SLEPT IN OVER 30 HOURS AND I AM SCARED TO CLOSE MY EYES INCASE SHE HAS ANOTHER SEIZURE. AND WHEN I DO CLOSE MY EYES ALL I CAN THINK ABOUT IS WHAT I JUST SEEN HER GO THROUGH.

THANKS AGAIN SO MUCH FOR EVERYONES PRAYERS!!!!!!!!

8 comments:

Anonymous said...

Michelle,
Wish we were there to give you and Alicia a hug. Please know that many, many people are praying for your spunky little granddaughter. She has the best care and with all these prayers storming heaven, He'll be there watching over Alicia. We are glad Krisstina is with you. We all know how wonderful and compassionate she is to our FAmily. Hope you can rest a little. Alicia has the best Me-Ma in the world.
Love, the Fiaschetti FAmily

Anonymous said...

I don't have the right words, but I do know what it is like to watch something so scary that is out of your control. I know Wesley has stopped breathing a couple of times in front of me and I had to stand back while nurses "bagged" him. It's awful to feel so helpless. Please know we are all here for you and thank you so much for updating. Hang in there.

Charisse said...

Dear Erika,
I can understand that as the mummy, you would be having a very hard time. I know Michelle and Alicia are close but there is nothing like the mother. I know your heart would be aching for your little girl. You would be longing to hold her. We are praying for you also, Erika, because this would be a very hard situation for you to be in as a mother. Bless ya gal.
Michelle, I know you love Alicia too and I know you would have been terrified yesterday. I am glad that Alicia is back in her room and that things are getting sorted. That was real scary. I will check back in again to see what they can make of it all.
Love Charisse

Karen BeTheChange said...

Hugs. What an ordeal, hm??!! We are praying and checking in often. I'm so happy to read that Alicia is improving. God is so good. Hugs.

Anonymous said...

Am so glad she's doing better!!!!!!!!! Been praying so hard for your whole family!
Psalms 37:39-40 But the salvation of the righteous is of the LORD: he is their strength in the time of trouble. And the LORD shall help them, and deliver them: he shall deliver them from the wicked, and save them, because they trust in him.
Prayer Bears

Anonymous said...

Michelle,

Hang in there! I'm glad KK was there too! You know we are right there with you in spirit and praying for you both! Tell little miss firball that we all love her!

Blessings and Bear Hugs,

Anonymous said...

That was suppose to be Miss Fireball! oops!

Anonymous said...

I prayed for you all night. Alicia is all I could think about. I am glad she is out of the ICU and back in her room. Erika, I know this has to be hard on you being so far away and I am praying for you and your little girl. You will be with her soon. God has his arms wraped around her and will take good care of her, as is your mother. Michelle, You are very stong, Alicia is so very lucky to have you. You keep your faith and belive everything will be o.k.. I wish I were there, but am glad Krisstina is able to be there with you. Call me.
Sending all my prayers and a big (((HUG))) to Alicia.