I THINK I MIGHT HAVE GOT THE DAYS MESSED UP SOMEHOW. I COULDN'T FIGURE OUT IF IT WAS 47 OR 48 THINK I WILL JUST START WITH DAY FORTY ??? AND THEN FIFTY ???
I AM VERY VERY VERY TIRED. I FEEL THAT TODAY MIGHT BE THE DAY WHERE I MAKE MYSELF BE HEARD. ALICIA HAS ANOTHER FEVER RIGHT NOW, AND IS POOPING ALL OVER EVERYTHING. I MEAN IT IS JUST LIKE A RIVER AND IT HAS BEEN FOR OVER THREE WEEKS. IT SEEMS TO ME LIKE THEY ARE NOT TRYING ANYTHING DIFFERENT, THEY ARE JUST WAITING TO SEE IF WHAT THEY ARE DOING STARTS TO WORK. AT LEAST THAT IS HOW I FEEL. ALTHOUGHT YESTERDAY THEY DID TRY TO MAKE HER TAKE A DIFFERENT PILL THAT WAS SO HUGE, A HORSE WOULDN'T EVEN BE ABLE TO TAKE IT AND THEN THEY HAD THE NERVE TO TELL ME I NEEDED TO TRY MY HARDEST TO MAKE HER SWALLOW IT WITHOUT HER BITING IT. YEAH RIGHT!!!!!!!!!!!!!!!!! SHE IS FIVE YEARS OLD!!!!!!!!!!!!!! I TRIED EVERYTHING FROM PUTTING IT IN JELLO TO PUDDING TO BRIBING HER TO THREATENING HER. THAT IS WHEN I DECIDED THIS IS ENOUGH. I AM NOT GOING TO PUT HER THROUGH THIS EVERYDAY. I KNOW THERE HAS TO BE SOME OTHER OPTION OR DIFFERENT MED THAT CAN BE IV OR NG TUBE. WHAT IF ALICIA WAS 3 YRS OLD, WOULD THEY EXPECT HER TO SWALLOW A CAPSULE WITHOUT BITING IT???????????
I DO KNOW IT IS TIME TO AT LEAST SEE A LITTLE IMPROVEMENT. I FEEL WE ARE BACK TO DAY ONE WITH THE FEVER AND DIAREHA.
MAYBE I JUST NEED SOME REST. THE NIGHT BEFORE LAST ALICIA HAD A HORRIBLE NIGHT WITH FEVERS AND LAST NIGHT WAS EVEN WORSE. THEY STARTED A MED AT 12:25 AM THAT HER VITALS HAD TO BE CHECKED EVERY 15 MINUTES. AND THE MED TOOK 4 HOURS. I WAS SOOOOOOOOO MAD BUT I BIT MY TOUNGE BECAUSE I KNEW MY BABY NEEDED IT. SO NEEDLESS TO SAY WE HAVE NOT BEEN TO SLEEP IN TWO DAYS AND NOW SHE HAS ANOTHER FEVER.
PLEASE JUST KEEP ALICIA IN YOUR PRAYERS. I JUST WANT HER TO GET BETTER!!!!!!!!!!!!!!!!!!!!!!!!!
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, August 5, 2008
DAY +48
Posted by Michelle at 8:46 AM
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5 comments:
Dear Michelle,
My heart aches for both of you!
Am continuing to keep Alicia and you in my prayers and hope that this awful time passes soon and Alicia will be on her way to recovery.
Please, if you want to talk, call me.
Love, Mary Ann
I am so sorry this is such a difficult journey. I can feel your frustration in your words and your desperation. The yearning for Alicia to turn the corner and start getting better. I hope that day comes soon. Please know we are keeping you in our prayers. Sometimes the only thing you can do in just hang in there, even if it's only by a thread. Try to get some sleep. Put on some headphones and a mask and tell them to wake you if they need to. Otherwise you are "out of order" until morning ;0) Hugs.
I'm so sorry, Michelle. I can't imagine dealing with all you are dealing with and for as long as you have been dealing with it. Poor Alicia! I feel so bad for her and how she is feeling. I can definitely understand you being done with how things are going and wanting improvement. I know I would feel the same way.
How in the world are you supposed to make a young child take a huge pill like that?! I have no idea. I asked Tyler about it because it made no sense to me. He works in the medical field. He said that it sounds like a time-release type of medication where the coating on the pill takes a certain time to dissolve. One reason for this would be that they want the pill to be in a certain part of her body before it starts to dissolve. That would be why they don't want her to bite it because it would mess up the time-release coating. He also said that sometimes they can't make a pill into liquid form for an IV because they can't stabilize the medication enough in liquid form. He isn't positive this is what you are dealing with, but that is what it sounded like to him. I didn't know if that helped at all to share that or not. I still have no idea how in the world you're supposed to get Alicia to swallow that... I seriously can't imagine Emma ever agreeing to swallowing something like that.
My heart goes out to you guys. I hope things start improving quickly. I also hope you both can get some rest!
Hugs,
Teresa
Hope you could get someone to listen and get Alicia the help she needs!
Praying right now!
Romans 8:15-18 For ye have not received the spirit of bondage again to fear; but ye have received the Spirit of adoption, whereby we cry, Abba, Father. The Spirit itself beareth witness with our spirit, that we are the children of God: And if children, then heirs; heirs of God, and joint-heirs with Christ; if so be that we suffer with him, that we may be also glorified together. For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.
Prayer Bears
Hell Michelle,
you do sound so tired my love. I am sorry you are so tired. I am sorry that Alicia seems to have endless fevers and endless diarrhoea. I do know your frustration in wanting Alicia to get better and be free of these problems. I can imagine being extremely frustrated in your position. YOu are an amazing lady, Michelle. Keep plodding on even though you don't feel like it.
Sometimes a tablet cannot be bitten into because it is a slow release tablet. The coating is usually enteric coating and if it is bitten the medication will not be slow release but will give the dose all at once....usually.....or it won't be given at the right time. This is probably the reason why she must swallow it whole. I hope there is another type of medication they can give that doesn't need to be in a pill. Some meds do not come in IV form. Go head and be assertive and ask though for both Alicia and your sake.
Still praying,
Love Charisse
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