April 14th, 2011. Day +34   2 comments

We all slept pretty nicely last night.  Charlotte barely made a peep all night and Molly slept from 9pm to 4am.  She had a quick bottle and she was back down by 4:30 and slept until 7:30am!

Charlotte was pretty happy most of the day today.  She only got a little grumpy when we were changing some poopy diapers and tried to have a bath again.  She is still completely put off by baths right now.  She had even more to drink today than yesterday and ate pretty good too.  We didn’t bother going outside because it was so windy and it looks like we didn’t miss that great of a day.  She wasn’t as active today, but we did catch her walking around the house playing once in a while.

She started with the lower dose of steroid this morning and so far, so good.  We start her on the lower amount of fluids tonight.  It will only run over 10 hours instead of 14 so she won’t be hooked to tubies when she is awake at all.

We didn’t hear anything from the clinic again today.  So at the end of the day, Amy called the NP that works with BMT patients.  She told us that Charlotte’s CMV test came back not-detected (which is great!) and her cyclosporine level on Tuesday was 254-also pretty good for oral medications.  Dr DeSantes was also so happy with the rest of her numbers on Tuesday that he won’t order a blood sample to be taken by the home health nurse tomorrow!  They will still have to stop by to change her PICC line dressing, but that should go pretty quickly.

Charlotte drank so well today that we were able to get one of her medicines (two capsules) into her milk and she never slowed down drinking it up.  That meant at 8pm we had only 4 syringes of oral meds to take and Amy prepped them while I gave them to CJ.  We were done within two minutes with no tears or fits!!!

Tomorrow will be one week at home.  We hope it goes well and she continues to get well.  She has sure impressed us with how great she appears to be doing at home.  I know after every round Amy and I were always a little concerned about whether we were going home too soon, and this round was very much the same.  But Dr Diamond must know CJ well.  She knew CJ was ready to get home and she was right!

Posted April 14, 2011 by L. Elske in Uncategorized

2 responses to “April 14th, 2011. Day +34

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  1. Yay! What a great week and great progress Charlotte has made! She’s amazing!

  2. I was going to post some long, droning speech about how wonderful it is to see Charlotte progressing at home…..but I think I’ll go with Charlotte’s method of measuring……TWO THUMBS UP! Love you

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