April 2nd, 2011. Day +22   4 comments

Goodbye March. One month down!

Charlotte is still doing well.  She didn’t have any vomiting episodes since the previous night and no real coughing fits either.  She was very happy last night laying in bed.  She didn’t want to sleep.  She just laid there and was happy and playful.  Eventually she got in a few good hours of sleep

CJ enjoying a chocolate chip mini muffin!

and woke up happy enough.

Her WBC is back up to 1.2, and her neutrophils are now at 580.  So things are looking good there.  Her weight was 14.6kg today, so that is also very promising.  But her rash has gotten worse on her body.  It still looks petechial, but now the bumps are a little raised which means they are something else.  Dr Diamond, the attending physician this weekend and next week, says this rash reminds her of when CJ started with the possible medication rashes a couple of weeks ago.  So she made the call to cease the last antibiotic today.  She thinks Charlotte’s counts are good enough, and no fevers for well over a week are good signs that there should be no need for antibiotics at this time.  Hopefully we will see some better results soon.  Today we started her on the oral version of Acyclovir.  Charlotte doesn’t mind the taste of this one too much, but it is a pretty hefty amount of medication.  She is used to getting 1.5mls of medicine when she had fluconazole and now her ursidiol twice a day, but the acyclovir is 10mls-twice a day.   And it is very runny so CJ will start to gag on it if we give it to her too quickly.  It will take some getting used to.

Charlotte had a pretty good day, playing in the hall and in her room.  She is getting a little moody at various times.  There is usually no telling when it can happen, but sometimes she just gets pretty sad and cries.  She says she doesn’t have anything hurting but continues to cry and just wants to be cuddled.  We think it may still be the steroids she is on.  These may just make her sad instead of feisty like the previous rounds.  She was able to be tubie free for three to four hours today!  And tonight, while she is sleeping, she is only using one of her PICC line lumens to get her medicines and TPN.  The other is capped off until her blood draw tomorrow!!

Tubie free time in the hall!

She had a few different things to eat today.  Not overwhelming helpings, but she showed interest in eating different things throughout the day.  We are hoping that she will continue to get her appetite back and start eating some more measurable amounts.

Posted April 3, 2011 by L. Elske in Uncategorized

4 responses to “April 2nd, 2011. Day +22

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  1. Good to see that happy smile. She is having a lot of good reports and that is good. I burned a candle for her today at church and my other friends. It burns all week. Keep up the good works.

    Joe & Sue Kaminski
  2. How exciting to see the progress on so many different fronts – eating, less meds, transition to oral meds, HOCKEY! What a brave, strong little girl!

  3. Tubie free time and chocolate chip muffins! What a day!!

  4. I cannot get over how much Charlotte has grown! Look at some of the September photos. Seems like she’s been busy doing more than just getting healthy!

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