March 30th, 2011. Day +19   3 comments

Charlotte had a pretty rough morning.  She had a few coughing fits that ended up in a little vomiting.  She had a really tough time between 5 and 7am where she just seemed to cough non stop.  But she made it through and slept until almost noon.  When she woke up, she was very happy and playful.  She also clocked in at a not so hefty 14.9kg today-down from 15.4 yesterday.

Her WBC was up to 1.2 this morning, and she had 323 neutrophils.  She had a little petechial rash this morning that lasted the whole day, but the doctors think it might be from her low platelets and last nights coughing fits causing blood vessels to pop in around her mouth and eyes.  The doctors are all still impressed with how she looks otherwise and will probably discontinue the other antibotic she is on or the antifungal medicine tomorrow.  They also reduced her morphine basil to 0.4 and her TPN to run over 18 hours, down from 20 yesterday.

Dr DeSantes stopped in today and seemed pleased with her progress.  He didn’t see any evidence of any GHVD rash, and even mentioned that they may never know if it was GVHD or engraftment sydrome.  But either way, it appears to have cleared up at least for now.  Tomorrow they may consider dropping her steroid dosage down again so we hope it stays away.  He also thinks that her hexaplex test (viral swab) might be back by the end of the week so that would be great.

Amy is teaching her how to blow her nose, and she likes the demonstration.

She had a pretty good day.  Her nose wasn’t too runny most of the day, unless she was doing some coughing.  She started to vomit small amounts in the afternoon with no coughing but the nurses think it is either mucositis making its way out of her or her body reacting to the hours she was not getting TPN.  Our nurse said that it can be common for kids to vomit after the TPN is reduced.  So they put her on zofran every 8 hours to make it better.  She threw up probably five times this afternoon and none since getting the zofran so we hope it continues to help.

She had another good bath tonight and went down to sleep by 9:30.  She started coughing at about 9:45 and ended up doing so until 10:15 when she threw up again (this time most likely because of the coughing).   We got her cleaned up and she is now resting a little more peacefully.  I hope she has a good night of sleep and some good numbers tomorrow too.  Amy and I aren’t yet tired of this place, but we hate to see how accustomed she has gotten to life here.  The nurses frequently have to take her vital signs in the middle of the night and she has gotten so conditioned to the sounds of the bp monitor turning on that she raises her right arm for the blood pressure cuff (she knows it can’t be done in her left arm where her PICC line is), sticks out her index finger for the pulse/ox lead.  Then afterwards raises her arm up again for a temperature reading-all while staying almost completely asleep.  The nurses think it is so cute.  But I think it is a little sad…and also very very cute.

Posted March 30, 2011 by L. Elske in Uncategorized

3 responses to “March 30th, 2011. Day +19

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  1. Good Morning! We can really think the good is very appropriate and the blog is certainly sounding good. You three are doing absolutely wonderful, hopefully there will only be hills from now on and not mountains, prayers certainly and the wonderful Drs. and nurses are helping to make the miracle of a good life for Charlotte and her family. God Bless all of you. Many XXXXXXXand OOOOOOO. Uncle Jim and Aunt Judy

    Uncle Jim and Aunt Judy
  2. Sounds like each day something good happens, and soon everything will fall in place. Hi to the Grandma’s & Grandpa’s and Molly I know they are having fun.
    Keep up the good work Charlotte and Dad & Mom.

    Joe & Sue Kaminski
  3. I’m so glad to hear the rash is on it’s way out! Again, it put a smile on my face to hear how she reacts when she hears the nurses while she is sleeping! What a good girl. The nurses are being very helpfull in reassuring you. Thanks for the updates, I read them everyday. Can’t wait to see her again, I have some more handsewn goodies for her when she does. No slit up the sleeves this time though, only cute, cute, cute stuff. Take Care. Dawn B.

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