O MY..... WHERE TO START??????? I HOPE THIS ALL MAKES SINCE, I AM WORKING ON THREE HOURS OF SLEEP. LAST NIGHT ALICIA HAD A VERY HARD NIGHT. SHE STARTED VOMITING AROUND 10PM, ALONG WITH THE FEVER THAT GOT VERY HIGH AGAIN LAST NIGHT AND THE DIARRHEA, SHE HAD A VERY HARD NIGHT.
FIRST ERIKA I WANT YOU TO NOT BE UPSET WHEN YOU READ THIS ENTRY AND CALL ME BABY IF YOU HAVE ANY QUESTIONS. I AM MAKING SURE OUR BABY IS GETTING THE BEST CARE AND I PROMISE SHE WILL BE BETTER SOON!!!
THIS MORNING WAS THE ULTIMATE THOUGH. I HAVE DEMANDED ANSWERS, I WOKE TO ALICIA'S PLATELETS DOWN TO 3,000 AND THERE WAS ALOT OF BLOOD IN HER STOOL. I NOW HAVE HER LAYING WITH NO CLOTHES ON BECAUSE I AM CHANGING THEM EVERY TIME I CHANGE HER DIAPER WHICH HAS BEEN TWICE AN HOUR SINCE YESTERDAY. THEY DID GIVE HER PLATELETS AROUND AN HOUR AGO SO THEY HAVE HELPED A LITTLE WITH THE BLEEDING. THE DOCTOR SEEN HER STOOLS THIS MORNING AND HAS ORDERED HER NPO IMMEDIATELY ( NO FOOD OR DRINKS) AND SHE IS GOING TO THE OR TODAY FOR A SCOPE TO FIND OUT WHAT IS GOING ON AND HOW SEVERE THE GVHD (WHICH THEY SAY IS ALMOST FOR SURE SHE HAS IN HER GUT) IS. FINALLY I MIGHT GET SOME ANSWERS.
DENISE AND CASSIE GOT HERE YESTERDAY AND ALICIA SMILED SO BIG WHEN SHE SEEN CASSIE. ALICIA POPPED RIGHT UP AND HER FEVER LEFT AND THEY PLAYED FOR HOURS. IT WAS AFTER CASSIE LEFT HER THAT SHE STARTED FEELING BAD AGAIN. I WAS SO HAPPY TO SEE THE BOTH OF THEM, BUT NOT AS HAPPY AS ALICIA. DENISE BROUGHT HER A HUGE SPONGE BOB PILLOW AND HE UNCLE MIKE SENT A CUTE LITTLE BEAR THAT SAID COME HOME SOON AND CASSIE BROUGHT HER DORA AQUA DOODLES. I THOUGHT YESTERDAY THAT CASSIE WAS THE MEDICINE ALICIA NEEDED, AND I THOUGHT OK TOMORROW ALICIA WILL FEEL BETTER WHEN CASSIE GETS BACK OVER HERE .................... UT BOY WAS I WRONG.
CASSIE AND DENISE WERE STOPPED AT THE FRONT DESK AND CASSIE AND ALL OTHER CHILDREN ARE NOT ALLOWED ON THE FLOOR INDEFINITELY. ALL SIBLINGS TO ALL PATIENTS ALONG WITH VISITORS WERE FORCED TO LEAVE AND THE BMT FLOOR WAS PUT ON A STRICT LOCK DOWN SO CASSIE WILL NOT BE ABLE TO SEE ALICIA AGAIN BEFORE SHE LEAVES MONDAY :(
THERE IS A VERY INFECTIOUS DISEASE EFFECTING CHILDREN HERE CALLED VRE ( VANCOMYCIN RESISTANT ENDOCCOCUS????) THE INFECTIOUS TEAM HAS BEEN CALLED IN AND EVERYTHING IS SHUT DOWN HERE UNTIL THEY CAN GET IT UNDER CONTROL. ALICIA WAS TESTED YESTERDAY AND TODAY BUT HE HAS TESTED NEGATIVE. I LOOKED THIS UP ONLINE YESTERDAY AND IT IS VERY SCARY. IT MAINLY ATTACKS KIDS THAT ARE IMMUNE COMPROMISED AND HAVE BEEN ON VANCOMYCIN FOR A LONG TIME WHICH ALICIA HAS BEEN ON IT SINCE TWO DAYS AFTER WE WERE ADMITTED. SO IT LOOKS LIKE ME AND DENISE WILL BE TAKING TURNS AT THE RMH WITH CASSIE AND ALICIA. TODAY THOUGH I AM NOT LEAVING ALICIA UNTIL AFTER SHE HAS HER PROCEDURE AND I KNOW SHE IS OK. BUT I WANT DENISE TO BE ABLE TO SPEND TIME WITH HER BEFORE SHE LEAVES.
I AM GLAD THOUGH THAT I GOT A COUPLE OF PICTURES YESTERDAY WITH ALICIA AND CASSIE TOGETHER AND I WILL POST THEM SOON BUT THE INTERNET HERE IS NOT WORKING RIGHT BECAUSE THE HOSPITAL HAS LOST ELECTRICITY TWICE ON TOP OF EVERYTHING ELSE GOING ON SO I PROMISE TO POST THE PICTURES SOON.
PLEASE PLEASE KEEP ALICIA IN YOUR PRAYERS
P.S. HAPPY ?1ST ( AT LEAST I LEFT THE FIRST NUMBER OUT) HAPPY BIRTHDAY KELLI
KELLI IS MY OLDEST SISTER AND THE BACK BONE IN OUR FAMILY. LOVE YOU KELLI AND I HOPE YOU HAVE A VERY GOOD BIRTHDAY. SORRY I AM NOT THERE.
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, July 18, 2008
DAY +29
Posted by Michelle at 10:45 AM
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5 comments:
you probably dont know me but my aunt caren told me what was going on and i am so scared for michelle and alicia i really hope she get better but one good thing to think about in hard times for me is this poem called footprints:
One night I dreamed of walking along the shores of different lands.
I could tell that You were with me by the footprints in the sand.
As I gazed upon the heavens, I saw pages of my life.
It was then I realized that You remained there by my side.
When the clouds began to gather and the rains came falling down,
I looked to only find one set of footprints on the ground.
I said, "Lord, why did You leave me in the troubled times of life?
I believed that You would always walk beside me day and night." (Then I heard:)
"My precious child, I'd never leave you.
I have carved you on the hollow of My hand.
It's then I carried you in My arms,
When you see one set of footprints in the sand"
Dear Lord, will You be with me as I travel through the years?
Will You be there in the struggles? Will You wipe away the tears?
As my eyes turn toward the ocean and the shores of distant lands,
I'm still thinking of the single set of footprints in the sand. (I heard Him say:)
"My precious child, I'd never leave you.
I have carved you on the hollow of My hand.
It's then I carried you in My arms,
When you see one set of footprints in the sand."
sorry its so long but its one of my favorite poems especially because it has to do with god just remeber that youre in my prayers.
sincerely,
Carrianne Burris
I am still praying for Alicia. All of my prayers and love I am sending your way. God is with you both. You call me if you need to.
Sarah sends a Big Hug to Alicia, she said she is praying too.
Love, Lori and Sarah
I think I held my breath the whole time I read that entry... Those are low platelets! Glad they gave her more. I hope the bleeding stops soon and I REALLY hope and pray that she doesn't end up with that infection that they have found. That is beyond scary. Give that little girl a hug for me...and one to you too. I am so sorry that things are a struggle right now. You are all in our prayers and we hope that soon things take a turn for the better and that you'll get all your answers. Thanks for the update. I wish there was something we could do to help...
Love,
The Clifton's
Dear Michelle,
everything sounds so scary but I can assure you that once they have done the scope there will be more knowledge and they can help Alicia a LOT more. I feel for you and I feel for Alicia. She must be feeling so poorly. We are praying my love.
Erika, I can understand how this type of post would make you feel upset about your baby girl. We are praying and sending lots of hugs.
Love Charisse
Sorry it was such a bad day....Know that I'm still here praying!
1 Kings 8:28 Yet have thou respect unto the prayer of thy servant, and to his supplication, O LORD my God, to hearken unto the cry and to the prayer, which thy servant prayeth before thee to day:
Prayer Bears
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