April 4th, 2011. Day +24   5 comments

Charlotte has been pretty good the last few days.  Her CBC numbers continue to improve.  Today her WBC was up to 1.6 and her neutrophils were 880.  She was also up in both hemoglobin and platelet counts without transfusions so these are good signs.  Her body rash has not gotten a whole lot better over the last couple of days.  Dr Diamond is pretty convinced that she still has signs of GVHD rash on her hands and feet.  But the rest of the body rash is still showing up in places and has even spread a little since Friday.  Dr DeSantes stopped in today to take a look at her and he is not sure if it is a medication rash or not.  He does recommend that we do not lower the steriod dose at this time because of the amount of rashes on her body.  He may recommend a hydro-cortisone cream and see if that helps it improve.

There have been other changes to her treatment schedule today though.  She is now off the IV Micafungin (anti-fungal) and on an oral dose of Voriconazole in its place.  She is continuing her oral dose of Ursodiol and also is on the oral Acyclovir.  All of these are twice a day medications.  This afternoon she started the oral version of Cyclosporine.  This is a very small amount of medicine, but the nurses and pharmacists all say it tastes pretty skunky.  So we are trying to mask it by mixing it with a little orange juice.  She gets this three times a day.  They also decreased her morphine basil to 0.1 today.  She still complained of tummy pain throughout the day, but it seems a little more mild than it was last week.  We will have to talk with the doctors if this continues to bother her tonight into tomorrow.

CJ has shown some interest in eating and drinking a little more these last two days.  She now has a little bit to eat a few times a day.  She even had half a cup of spaghetti-o’s yesterday and a fish stick.  Though she was not interested in the same meal today.  She did have a few bites of french toast this morning and some chips and goldfish crackers later in the day.  These are also good signs that she is starting to feel better.  The dietician said that they will need her to start getting in 1000 calories a day orally before they will remove the TPN.  That seems kinda high to me for a 30lb little girl that just went through a tough few weeks…but we will see how she does over the next few days.

She has been out walking the halls yesterday and today so I hope her energy level stays this high.  She has stayed happy most of the time.  She still has a few sad moments.  We are unsure if these times are related to pain or steroid mood swings, but they usually don’t last too long so they are easy to forget about.  So far, a couple of really good days.  We are really trying not to be greedy, but we are hoping for several more yet.

 

 

Posted April 4, 2011 by L. Elske in Uncategorized

5 responses to “April 4th, 2011. Day +24

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  1. Such a sweetheart. You are all doing so well and she sure is getting better each day. Soon everything will fall in place. Keep your chins up.

    Joe & Sue Kaminski
  2. That smile of Charlotte’s is worth a million dollars! We are so happy to see the progress she is making.

  3. I’m so glad to hear Charlotte’s had some good days! She’s a trooper!

  4. Priceless pictures today – big cheesy smile in the tub, completely unaware while eating and watching some TV in the chair! Such good news and great strides in growing new cells, it sounds like!

  5. Go Charlotte Go! Your body knows just what to do and it’s growing healthier everyday. It’s amazing what medicine and faith can accomplish together. We continue to pray that Charlotte’s body stays strong and that you 4 will all be together again soon in Columbus. 🙂

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