March 28th, 2011. Day +17   8 comments

Charlotte again slept until almost 1pm, until we had to wake her up to get her weight-which was good-down to 15.6 kg.  She was happy when we got her up and watched some TV for a little while before wanting to play on the couch.

Her WBC was up to 0.8 today, and she had 288 neutrophils.  Her platelets were down to 28k, but her hemoglobin went up again from 9.7 to 9.8 by itself.  Her cyclosporine levels were high again this morning (303) so they adjusted her dosage this afternoon.  They also lowered her steroid dose too and will watch her rash to see if it gets any worse with the smaller amounts.  The attending doctors and nurses today said they were impressed with how great she looked!  She had a couple of goldfish and a little bit of water today too.

She had some extra tubie free time because her IV tubes had to be changed so we celebrated by walking around the hall for 45 minutes.  She took another long bath after a good poopy diaper, and she hated to leave the tub.  I think she was in there for almost an hour and a half!

Her blood pressure readings this evening were getting pretty high again (151/111, 133/89) so I hope it is related to the cyclosporine levels and nothing else.  Her temperature and pulse have been normal all day so we aren’t sure what is going on.  Tomorrow she will get her IVIG and bi-weekly Pentamidine and she may need platelets as well.  Today was one really swell day and I hope this trend continues.

On another positive note, Alexis is out of the ICU after another long two weeks!  I hope she and her parents can get some good rest.


Posted March 28, 2011 by L. Elske in Uncategorized

8 responses to “March 28th, 2011. Day +17

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  1. Charlotte looks fantastic – like she’s just out on a girls day shopping trip with mommy!

  2. Just read your blog after a few days–CJ is looking and sounding so much better. Loved the video of her countind and identifying the beads. Keep up the great progess. Glad Alexis is doing better also. Keeping the prayers coming. You are all awesome!! Love

    Steven & Terry Licitar
  3. So thankful for your updates and praying always…

  4. Where is the “Like” button when you need it??? 🙂

  5. it seems to get better each day. God Bless

    Joe & Sue Kaminski
  6. It’s so encouraging to see the pic’s and read how well Charlotte is doing … a little better each day – YEAH!! And, another day closer to her cure!! It was great to see the picture of little Molly, too, who seems to be very happy and thriving. All of you are doing great – “keep on, keeping on”!! Love and hugs for everyone…

    Aunt Cyndee & Uncle Earl

  7. We continue to think of you and pray for you daily. You are doing such a great job Lon & Amy. Glad to hear Charlotte is doing much better.

    Stacy, Dan, Emily, Danielle & Kayleigh
  8. I’m so glad to hear that Charlotte is doing better today and I am hoping and praying that today was a better day too.

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