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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.



Saturday, August 16, 2008

SURGERY UPDATE

I THINK I WILL START THIS ONE ON A LITTLE MORE POSITIVE NOTE WITH PICTURES OF ALICIA AND THEO DURING THEIR SLUMBER PARTY AS I PROMISED I WOULD FROM MY POST EARLIER THIS MORNING BEFORE WE WENT DOWN TO THE OR.......................
AREN'T THEY JUST THE CUTEST COUPLE!!!!!!!!!!!!!!!!! THEO GETS TO SPEND A LITTLE MORE TIME WITH ALICIA TODAY AS WELL. SHE IS VERY HAPPY ABOUT THAT. THEY HAD CAME IN EARLIER TO GET HIM BUT ALICIA STARTED CRYING AND THE CHILD LIFE LADY DID NOT HAVE THE HEART TO TAKE HIM WITH WHAT ALICIA HAD JUST WENT THROUGH. ( THANKS )

THE REMOVING OF THE CENTRAL LINE WENT WELL, WE FINALL LEFT THE ROOM AFTER MUCH CONFUSION AROUND 9AM HERE IS ALICIA ON HER WAY TO THE OR.....


SHE WAS ONLY IN THE OR FOR ABOUT 45 MINUTES AND THE DOC CAME OUT AND SAID EVERY THING HAD WENT FINE, HE SAID THEY HAD REMOVED THE C-LINE AND THERE WAS ONLY A LITTLE BAND AID IN THE SPOT IT WAS AT, HE ALSO SAID THAT THEY DID NOT HAVE A PROBLEM REPLACING HER NG TUBE AND THAT THEY HAD PLACED TWO REGULAR IV'S ONE IN EACH WRIST THAT WOULD BE USED UNTIL MONDAY WHEN THE PIC LINE WOULD BE PLACED. I WAS SO HAPPY EVERY THING WAS GOING SO WELL BUT I SHOULD OF KNOWN BETTER!!!!!!!!!!!!!!! WE GOT ALICIA BACK TO THE ROOM AND IN HER BED AND FINALLY GOT HER COMFORTABLE, THIS IS WHAT MY BABY LOOKED LIKE AT FIRST.....................
I KEPT WONDERING HOW IN THE WORLD WOUOD SHE FEED HER SELF OR COLOR OR PLAY WITH THEO. SHE COULD NOT MOVE EITHER WRIST, THIS IS GOING TO BE A LONG WEEKEND. BUT AT LEAST EVERYTHING WAS GOING GOOD.

SILLY ME.............. I SHOULD KNOW BY NOW THAT IT WAS NOT GOING TO GO THAT SMOOTH. THE FIRST THING THE NURSE DID WAS CHECK ALICIA'S SUGAR LEVEL AND IT WAS ALL THE WAY DOWN TO 32. I ABOUT FREAKED. I STARTED SHOVING PUDDING AND JUICE DOWN HER AND THE NURSE STARTED GETTING THE MEDS SHE NEEDED TO GET HER HOOKED UP TO GET THE LEVEL UP AND I COULD NOT BELIEVE WHAT I HEARD NEXT. BOTH, YES I SAID BOTH OF ALICIA'S IV'S WOULD NOT FLUSH. THEY BOTH HAD CAME OUT THAT FAST. MY BABY THAT IS IN THE MIDDLE OF A BMT HAD NO IV ACCESS. I WAS THINKING IN MY HEAD THAT THIS IS ALL JUST A BAD DREAM AND THIS WAS NOT HAPPENING. SO THEY CALLED THE IV TEAM WHICH TOOK ALMOST AN HOUR TO GET HERE AND ANOTHER HOUR TO FINALLY GET TWO MORE IV'S GOING AND THIS IS WHAT SHE LOOKS LIKE NOW........
THEY HAD TO PUT THREE BOX'S OF APPLE JUICE THROUGH HER NG TUBE WHICH ALSO NOW HAS CAME OUT OF PLACEMENT. OMG I NEED A VERY STIFF DRINK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

X-RAY IS ON ITS WAY DOWN NOW TO REPLACE THE TUBE. PLEASE PRAY THIS DAY IS OVER WOTH SOON. ( AND IT IS ONLY 3:20 )

8 comments:

Anonymous said...

OMG...what a day. THanks for the surgery update. Sending lots of love and prayers. Love, Dianne

Anonymous said...

Sorry I didn't stop by last night...internet problems.
Continuing to pray from Seattle!
Micah 7:7-8 Therefore I will look unto the LORD; I will wait for the God of my salvation: my God will hear me. Rejoice not against me, O mine enemy: when I fall, I shall arise; when I sit in darkness, the LORD shall be a light unto me.
Prayer Bears

Charisse said...

Oh My! What a crazy day! Thanks for the update. Still keeping you in prayer and hoping tomorrow is much better!
Love Charisse

Teresa said...

Those pictures are so sweet and thank goodness she got to keep Theo for longer! That is so cute she was up all night talking to him.

I can't believe both IV's & NG tube came out! What in the world? I can't imagine the roller coaster ride you guys are on. It would be nice for you both to have a boring, non-adventurous day.

Give Alicia a hug for us. We think she is doing AWESOME! We think you are doing awesome as well.

Maybe one day we'll get to see you. We found out Violet is not a match, so we'll probably be heading to Cincinnati (that is where you are, right? I need to look at your address!). I have no idea when we'll have the money to go, but we'll need to start planning that soon to meet with Dr Wagner.

You're in our thoughts and prayers.

Love,
Teresa

Anonymous said...

Hope today is a better day. Praying for you all. Love, Dianne

Anonymous said...

I wish I could send you a virtual drink! Aaaa. What a day. OMG!! I hope Alicia starts feeling better really really soon and that you get some sleep really really soon too!

sending lots of hugs,
rachel

Anonymous said...

Stopping by to let you know I'm here praying!
Psalms 62:1-2 Truly my soul waiteth upon God: from him cometh my salvation. He only is my rock and my salvation; he is my defence; I shall not be greatly moved.
Prayer Bears

Anonymous said...

Hey Galzzzz!

If only Theo could talk, what a tale he could tell! HA! Sorry about all the lines and ivs....sounds too familiar!!! Sorry I forgot the chicken nuggets the second time we saw you all! Give Alicia big hugs from all of us and pray the rash will disappear soon!

Blessings and Bear Hugs,