March 27th, 2011. Day +16   11 comments

sleeping in style with her favorite bracelets

Our little Charlotte is becoming a teenager.  She slept until 2pm today.  She even went down really nicely for us by 8:30 last night.  She slept very well and even gave us a few nice wet diapers in the very early morning without any lasix on board.  She woke up very happy and was weighed right away.  She was down to 15.9kg without lasix all day yesterday so we think that is a good sign.

Charlotte’s body was busy over the night.  Her CBC numbers this morning showed lots of promise.  She was at 0.5 WBC and even showed 190 neutrophils.  Her hemoglobin was up a little bit and she got a huge boost from her platelets yesterday.  She went from 15K to 44k-all of her other post-transplant transfusions only resulted in a gain of 10-15k.  The tests that reflect her kidney functions are still looking good, even better with no lasix in her system.  Her blood pressures have been pretty high the last couple of days, even for an Elske, but this morning we found out her cyclosporine levels were about twice what we wanted them to be-395 instead of around 200, and high BP is a common side effect so they cut back on that dose as well.  Her evening vitals were better already.

sorting through (playing with) Hero Beads

The attending physician stopped by when CJ was in a good mood so she was able to get a full examination done.  Dr Puccetti was very pleased with how she is looking.  She thinks her swelling has improved and her rash has gotten better.  She also likes what she sees in the CBC results.  And she has been on since Monday, so she has seen CJ when things were not going so well.  There is even talk about starting to decrease the dose of her steriods soon.  This is all pretty darn good news.  Amy also noticed this afternoon that CJ’s morphine pump was showing 0.6.  She had been at 0.8 most of last week.  We tried to drop her to 0.6 on Friday but she woke up with stomach pains so we put it back to 0.8.  But the nurse said today that it has been at 0.6 since at least last night…it may have been longer than that.  But the good news is that Charlotte appears to be doing just fine at 0.6.  This is one more thing that we will eventually need to cut out so every little bit helps.

Charlotte stayed happy all day.  We weren’t able to get any hall time in, but she spent a little time playing and coloring on the couch.  Out of the blue, she asked for a purple sucker today and I happened to find one at the desk of the restaurant from where I picked up dinner.  So she happily opened it and had a few licks, reminiscent of Mr Owl and his Tootsie Pop.  Then, true to teenager form, at 8pm she started really waking up.  She also started talking quite a bit.  She has been very hoarse the last several days so she has not said more than a few words at a time, but tonight she was talking like nothing had ever happened.  She still sounded sore, but she must not have felt it…she was just gabbing away.  She had a few sips of water and even said a word we did not expect to hear any time soon-“Swack”.  Loosely translated into “Snack”, I rushed into action trying to figure out what she might want to eat.  She said yes to some mac and cheese so I made a little cup.  She was not interested when I came back so I thought the moment had passed.  But she still said she wanted something to eat.  She settled for a few bites of Special K in milk.  She didn’t eat much, but she sure tried and that made us very happy!

She had a great time coloring again at the end of the night and she brought out her famous wiggle butt and wanted to share in a few family hugs.  I don’t know how many times Amy and I choked back tears tonight.  She was so cute, and she must have been feeling so good.  We got her to sleep around 11, and we hope she rests well and is ready to play again tomorrow!  We are anxious for this week for maybe Dr DeSantes and Dr Diamond to come back and take a look at her.  We hope they too will be pleased with her progress.  Thank you to everyone for your prayers.  We have a long way to go, but today was one helluva great day.

Here she is talking and playing with her Hero Beads:

Posted March 27, 2011 by L. Elske in Uncategorized

11 responses to “March 27th, 2011. Day +16

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  1. What an excellent way to start out my week! Great News! Charlotte is obviously determined to get through this ordeal in record time – keep it up! Lots of prayers and thoughts coming your way.

  2. Sounds like a great Sunday!! I just want to hug her–she’s so cute and sweet. I hope the doctors have nothing but great news for you today!

  3. It sounds and looks like Charlotte is doing much better – what great news. The video clip is cute, she’s one smart little girl identifying the shapes and counting. Hope this week brings continual improvements!

  4. Thanks for the video Lon and Amy! She sounds much better than she seemed from your previous posts.Charlotte is obviously on the mend and will only get better. I am so happy to see her and can’t wait to see her smiling face again soon. God has a plan for all of us, and you will see what He has planned for Charlotte when she finally comes home and the weight of this journey is lifted. You two have made all the right decisions for Charlottes continued recovery. I have faith, and will continue to pray for all of you and your family. Love to you all, Dawn B.

  5. Wow Charlotte looks so much better. We were out of town and I had to check in right away to see how she was doing.
    You guys are doing such a great job.

    Joe & Sue Kaminski
  6. What a beautiful voice coming thru the video! Thank you for another glimpse into Charlotte’s days. She is doing remarkable, as are you, Amy and Molly!

  7. I haven’t been able to read your blog since day one after
    Charlotte’s transplant. WOW. . .you’ve been through a lot. Charlotte remains to be a real trooper through it all! And both of you, Amy and Lon, deserve a great deal of credit for being such wonderful parents. You sure know the medical terms and I’m learning a lot from reading your blog. We will continue our daily prayers for all of you. With love and friendship, Jim & Judy

  8. Such great news!! She has been on my mind a lot lately and I’m so happy to see her making positive progress!! I can only imagine how this made you feel, I don’t even know you and it brought (happy) tears to my eyes. 🙂

  9. Continuing to think about and check up on you all every day. You are all amazing.

  10. I loved watching the video and hearing Charlotte’s little voice count the hearts that you all had!! Put a smile on my face! Here’s hoping this week brings many smiles your way!

    Terri and Andrew Balistreri
  11. Aww that video made me smile so much…

    Justin & Holly Christian

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