May 3rd, 2011. Day +53   6 comments

Charlotte and Molly have both been great.  Amy has been doing terrific at home with the girls.  She even gave them each a bath when I was out chowing down on some pizza last night!  Charlotte had her long clinic day today.  She needed to go in to have her blood levels looked at and also get hooked up to tubies to get her monthly Pentamidine and IVIG.  When we got there her temperature was 99.5!  That is as high as we remember seeing recently.  We were quickly worried something was wrong.  She was hooked up to her Pentamidine and we got to see her CBC numbers when they came back from the lab.  Her WBC is at 5.9 and Hemoglobin is at 12.0 and she has 130k platelets and 4950 neutrophils.  Her magnesium was 1.6 and phosphate 3.0 so those are both a little low.  Amy and I were both concerned that her WBC and platelets looked low.  We finally saw the NP again and she thought CJ’s white blood and platelet counts were just fine but also thought the magnesium and phosphate were too low.  So Charlotte is now on three tablets of each a day.  Hopefully those numbers will go up again.  She looked at Charlotte’s rash areas and said that she didn’t see any evidence of GVHD rash, and mentioned that she didn’t see any last week either.  So we can discontinue the twice daily hydrocortisone cream we are applying to her.  We can always lather her up if she starts to show signs of rash again.

The NP again said the plan would be to reduce her steroid dose next week and then again in another two weeks.  In 5 weeks Charlotte could be done with the steroids!  Then her swelling may start to go down but that will take a little while before she looks less puffy.  She was also a little concerned about CJ’s temperature (though it eventually dropped to 99.2, 99.4, 98.4 and 98.6 over the afternoon hours) and we then asked her about Charlotte’s PICC line and if we should think more about taking that out since it is an infection risk if she really doesn’t need it.  So the decision was made to pull it out today!  The nurse unwrapped her PICC dressing and gave the line a little pull and in less than 10 seconds, Charlotte was tubie free.  The actual PICC line removal was quite uneventful, but we are happy we don’t have that to worry about anymore.  We now have to give her the steroids orally, but she should be just fine doing that.  She has been so awesome with her oral meds.  And she went potty on the chair most of the time today as well!  She is becoming a big girl and we are so proud of her!

Posted May 3, 2011 by L. Elske in Uncategorized

6 responses to “May 3rd, 2011. Day +53

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  1. What a brave little girl! Awesome news that the PICC line is now gone, and potty training is going well! WOO HOO

  2. Such wonderful news!! Day by day your blogs come in with clarity and joy! May God continue to strengthen you and fill you with hope and peace.

  3. Hi Elske’s-
    Just wanted to let you know we are soooo proud of Charlotte, she is doing Excellent!!

    We also wanted to Thank You for the card you left for us. You guys are so throughtful!!

    Thanks From the Klug’s

  4. 3 cheers for tubie free!

  5. We join you in congratulating Peanut! Tubie free, potty training… it’s a wonderful day in the neighborhood!

    The NESCO Team

    Cheryl Batterman
  6. Slowly things are falling into place just fine. Have so much to be excited about. Bless you all.

    Joe & Sue Kaminski

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