March 24th, 2011. Day +13   6 comments

Charlotte had a pretty good night of sleep.  During the night she received her weekly IVIG treatment followed by a dose of Lasix and she had several good diapers between 12 and 6am.  So it was a productive time from that standpoint.  Amy and I spent the majority of the night reliving the events of the day and sharing our concerns for the future.  I think we ended up going to sleep sometime after 2.  We didn’t have a lot more to talk about.  We are very happy that it appears that she has engrafted, but are very worried about an extremely early diagnosis of GVHD.  We just wish Dr DeSantes was not out of town this week as he is likely to have seen this more often, but we hope the doctors here have it under control.

Over the past couple of weeks, Charlotte has probably been experiencing some weird dreams/sleeping issues…she will often talk and cry loudly while still being sound asleep.  It scares us when we hear it, but we are able to figure out that she doesn’t know she is doing it and probably won’t remember it.  Last night was no exception.  She cried pretty seriously that required Amy to hop onto the bed and comfort her for a few minutes.  Our nurse said it is common for some of the kids to have such episodes, maybe the morphine, maybe the low blood numbers or the pain, but we are learning to deal with it.

Her WBC was again at 0.3 today, which the nurse says is good that she is not engrafting too quickly.  Her platelets and hemoglobin were both low so she received transfusions of each today.  Her PTT number (bleeding time) is still high.  Her heparin was decreased yesterday so it will be monitored closely to make sure it doesn’t get out of hand.  The results of her blister viral swab from Tuesday and nasal swab from Sunday both came back negative today.  So we are least out of isolation now.

She finally woke up around 1pm but was pretty happy.  She looked puffy again and weighed in at 15.6kg.  Neither bad nor good.  Amy and I both thought her rash looked the similar to yesterday-very little, if any, improvement.  She was ok to get out of bed and into my lap for some good TV watching but that was over with in about half an hour.  She was requesting to go over to the couch and play.  We spent a good amount of time there coloring and playing and watching TV.  She got a little tired and ended up back in Amy’s lap by dinner time.  She then had a bath that lasted over an hour and a half!  She was content to just play with her toys and sit there.  Amy and I both couldn’t believe how well that went.  After CJ got out of the tub we changed her biopsy site bandages.  It looks pretty nasty.  They literally just cut hunks of skin out, but they appear to be healing nicely.  We also really got a good look at the rash while she was in the tub.  It really does go from the bottom of her feet to the top of her almost hairless head.  There is little of her body that is not affected by it right now.  The doctors say that with the treatment, they are not necessarily hoping it goes away soon, but rather want to make sure it does not get worse.  It can get more red and bright depending on how cold or warm she is, if she has been crying or feverish, or the time of day.  She has been wiping and scratching at her eye today again.  It looks pretty irritated.  The nurse and doctors think it may be too much morphine causing it.  Since her diaper area has improved vastly, they are thinking of starting to decrease the amount of her morphine basil.  They may make a decision on that tomorrow.  CJ seems pretty good otherwise for pain.  She still coughs a few times a day, and when they are good strong, productive coughs, she does cry quite a bit.  It is most likely the mucositis still hanging out in her throat and giving her pain when the cough moves it around.  Also, over the last few days she now sounds as if she has a very, very sore throat.  She is almost hard to understand sometimes.  She doesn’t speak loudly anymore, doesn’t say more than a few words at a time, and mostly points and makes grunting sounds when she wants something.  The nurses tell us this is expected and normal.

The attending physician stopped by tonight and wanted to see how her rash looked today.  She did talk a little more about the decisions her and Dr Diamond made yesterday and also said that there is a fine line between engraftment syndrome and early GVHD symptoms.  Though with her counts being 0.3 up from 0.1 the day prior, I think they felt a little more comfortable making the GVHD call.  She also said that she has spoken with Dr DeSantes and he is on board with the start of the lower dose steroids last night.  Again, Amy and I would love to know that we have the graft vs leukemia effect working for Charlotte.  But I think this was an awfully early diagnosis.  And to me, her rash already seems out of control with it being all over her body.  But for the first time since Saturday, we had a complete day free of a temperature higher than normal.  So I am calling today a win.

Posted March 24, 2011 by L. Elske in Uncategorized

6 responses to “March 24th, 2011. Day +13

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  1. Glad for the positives in your update. Thank you so much for keeping all of us informed. Miles and I continue to say prayers for CJ and her mommy and daddy every night, and he tells me every night, “Mama, don’t cry. It’s alright.” And, I know in my heart, he is right. God is taking care of all of you and it will be alright. Love to all.

  2. Praying for you all xo

  3. Hang in there you guys! I’ll keep praying.

  4. Thanks for the insightful blogs each day… it helps us understand the struggles you are going through. We are all here for you!

    Cheryl Batterman
  5. You are all in our thoughts and prayers all the time Know that this is a very hard time for all, but the future looks and sounds promising and that’s what all this past time has been. It’s spring and the time of the year when new life is sprouting and that’s what this is about for Charlotte. Keep up the hope!
    Love and God Bless, Aunt Judy and Uncle Jim

    Uncle Jim and Aunt Judy
  6. Sending virtual hugs to all of you. We knew these rough days would come…but Charlotte’s body responds well and quickly so hopefully better days are just around the corner. It’s so encouraging to hear, from a previous post, that the nurses say Charlotte looks better than most of the kids they see. Her little body and spirit are so strong. She is in good hands with all the great doctors and nurses at AFCH. Continuing to pray for strength, healing and better days ahead for you all.

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