ALICIA WOKE UP THIS MORNING LOOKING A LITTLE MORE LIKE HERSELF. SHE IS STILL BEING MEAN TO ALL THE NURSES BUT I STOPPED MAKING EXUSES FOR HER. THEY SHOULD KNOW BY NOW THE REASON WHY. SHE WAS VERY NICE TO THE GENTLEMAN DOCTOR (ROBERTS I THINK) THAT IS ON ROUNDS THIS WEEK. I THINKE SHE IS SWEET O HIM BECAUSE SHE HAS NOT BEEN MEAN TO HIM YET. BUT AS FOR THE REST OF THE NURSES THEY STILL GET "THE LOOK". ALTHOUGH JENN OUR NURSE LAST NIGHT DID END UP BEING HER FRIEND. ALICIA WAS VERY VERY NICE TO HER AND ALL IT TOOK WAS FOR JENN TO SURPRISE HER WITH A ROLL OF TAPE FOR HER BABY THAT SHE WAS PLAYING DOCTOR WITH.
SHE IS SLOWLEY GETTING HER APPETITE BACK ALSO. I ORDERED HER EGGS AND PANCAKES THIS MORNING, SHICH SHE USUALLY LIKES BUT OF COURSE WHEN IT GOT HERE SHE WANTED A HOT DOG INSTEAD, SO FINALLY AFTER I KNEW SHE WAS NOT GOING TO BUDGE I ORDERED THE HOTDOG AND SHE ATE IT ALL (WITHOUT THE BUN) THEN SHE ATE TWO WHOLE PUDDINGS!!!!!!!!!!!!!!!!
HOPEFULLY WITH HER EATING A LITTLE IT WILL HELP WITH THE POOP THAT THIS GVH IS CAUSING. I TOOK COUNT ON HOW MANY DIAPERS I CHANGED YESTERDAY AND IT WAS A TOTAL OF 18 POOPY ONES. (AND I DO NOT MEAN A LITTLE POOP :) THEY SAID THAT WAS A BIG EFFECT WITH THE GVH.
YESTEDAY SHE ALSO HAD A BIG PROBLEM WITH HER BP. SHE RAN REALLY HIGH ALL DAY, THE HIGHEST IT GOT TO WAS 141 OVER 106. THEY GAVE HER ALOT MORE MEDS FOR HER BP AND FINALLY THEY GAVE THE ONE UNER THE TOUNGE AGAIN AND IT CAME BACK DOWN BUT THAT HAS STARTED AN ISSUE WITH HER HEART RATE. ( I CAN NOT WIN :)
AND THIS TOPPED IT ALL......... ARE YOU READY.................... HER NG TUBE CAME OUT. YES YOUR RIGHT......THE ONE IN HER NOSE......... YOU SHOULD OF SEEN THE LOOK ON ALICIA'S FACE. SHE WAS SO SCARED, SHE KEPT SAYING "NO MORE TUBE PLEASE". SO AS OF THIS MOMENT THEY HAVE NOT PUT IT BACK IN. THEY SAID AS LONG AS I CAN KEEP HER EATING AND SHE IS TAKING HER MEDS MY MOUTH THAN THEY WILL NOT HAVE TO BUT ALL I CAN THINK OF IS HOW MUCH MEDICINE THAT IT. BUT SO FAR WITH ONLY A LITTLE FIGHT SHE HAS DONE IT.
SHE IS SLEEPING RIGHT NO SO I NEED TO TAKE ADVANTAGE OF SOME REST ALSO. I HOPE ALL IS WELL WITH OUR FA FRIENDS AND FAMILY. THANKS FOR CHECKING ON MY BABY.
P.S ONLY TEN DAYS LEFT ERIKA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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.
Tuesday, July 22, 2008
DAY +33
Posted by Michelle at 10:21 AM
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3 comments:
I am glad she seems a little more herself. I don't blame her for not wanting the NG tube back in. Michelle, every medication has a side effect on something else, so when they give one medication, it affects another part of the body....makes it seem like no one can win with anything and those are some strong drugs they give in transplant. Not to worry though, we will pray that everything will settle down. It is easy to say "not to worry" though. I can understand how frustrating it would be. Hehe...I am not a know it all but being a nurse helps to understand why so many things happen when you give so many medications! Sometimes that is bad for me since I know too much but sometimes it works...or a lot of the time it works in my favour. I hope the rest of the day goes ok and the NG tube can stay out, poor love.
Love Charisse
Sorry she's still having so many problems!
Know that I'm here praying!
Psalms 34:17-19 The righteous cry, and the LORD heareth, and delivereth them out of all their troubles. The LORD is nigh unto them that are of a broken heart; and saveth such as be of a contrite spirit. Many are the afflictions of the righteous: but the LORD delivereth him out of them all.
Prayer Bears
No entry today? don't know what that means....
Continuing to pray!
Psalms 23:1-3 The LORD is my shepherd; I shall not want. He maketh me to lie down in green pastures: he leadeth me beside the still waters. He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake.
Prayer Bears
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