April 6th, 2011. Day +26   12 comments

She slept pretty good last night.  She didn’t go down until 12:30.  Although she had us worried most of the night after that back pain episode.  We still never really figured that one out.  We thought it might be her kidneys or something.  She last went potty Tuesday afternoon at 4:45 and didn’t end up going again until almost 5am!!  But she went again right away so we figured her plumbing was working ok.

Charlotte woke up early-around 6:30 and insisted we watch TV.  I took her in my lap and we turned on Disney channel and I went back to sleep.  45 minutes later she went back in the bed to sleep some more and then she woke up around 9ish.  Right away she was not very happy to be up.  She started mentioning tummy pains and cried a lot.  Grandma E showed up and that wasn’t even enough for her to get happy.  She had a few more episodes over the next couple of hours but then we finally got her to eat some Fruit Loops and milk.  Shortly after that she started to perk up and was even ready for some hall walking!  All of us had a nice and fun time walking the hall.

In rounds this morning, things continued to look like a Friday discharge date might be possible.  We stopped another two medicines today.  She is now off of her Heparin drip and Ursodiol.  Both of those were used for VOD prevention.  So that is good that we might not have to worry about that any more.  They also decreased her TPN calories thinking it may stimulate her appetite-so she is no longer getting Lipids through her TPN IV line.  Without that Heparin drip she was able to spend almost the entire day tubie free!!!  We met with the discharge nurse to talk about post-transplant care at home and the things we need to do to get the house ready for her and how to protect her when we get home.  Dr Diamond stopped in and saw her.  Charlotte’s rash was back today again and Dr Diamond said that it is common to have this type of flare up when the WBC numbers go up.  Today she was at 2.1 WBC and 1140 neutrophils.  Usually the new white blood cells still see Charlotte’s body as foreign and attack it so that is why she had this new rash.  We greased her up in hydrocortisone cream and she was looking better towards the end of the night.

Her appetite was pretty good today.  She had a few bites of things at every meal and even did some snacking.  I think we are going in the right direction with that.  She still has yet to drink more than 4 ounces in a day.  So we have a little work to do there.

Dr DeSantes also stopped in to see Charlotte and said that she was looking very good and that we should be on our way home soon.  He said he will see us next week in clinic!!!  This was another good sign because I don’t feel that he was very impressed when he saw her on Monday.  But he was quite smiley today and said that she was doing well for Day +26 for her type of transplant (unrelated donor).  We had another dose of IVIG today to prepare us for when we go home.  We have been told that she will now get her IVIG and Pentamidine only once a month instead of weekly and bi-weekly.  Tomorrow or Friday we should also get another dose of Pentamidine to hold her over.  We will be going home on 14 hour TPN and twice daily IV steroids so they will have the home health nurse come and give us instructions on how to do that properly!  Seems a little scary, but if we can get her to start eating regularly she shouldn’t need the TPN for more than a week or two.  The steroids will then probably go to an oral version and she will be on most of the rest of these oral meds for at least 6 months post-transplant until her new immune system can protect her like it needs to.

Posted April 6, 2011 by L. Elske in Uncategorized

12 responses to “April 6th, 2011. Day +26

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  1. Home Sweet Home…just a few days away now…amazing! 🙂 🙂 🙂 🙂

  2. Your cautious optimism is very understandable. It is so great to hear things continue to go well. Will keep our fingers crossed and say a prayer that you’ll be home to enjoy the weekend.

  3. YEAH!!!!!!!!!!!!!

  4. Yippy skippy for going home tomorrow!

    Cheryl Batterman
  5. Sounding good now. Take each day as a better day. he best to all of you when you get home. Been a long Jounery.

    Joe & Sue Kaminski
  6. Even with those “not feeling so good” times, Charlotte is doing so great and just keeps marching forward!! I’m sure there will be more adjustments once you finally get home, but, oh, won’t that feel great to get back to Columbus again!!! Hopefully, little Miss Molly will be able to come back home soon, too, so your family can all be together again. Good times are ahead and getting closing every day!! Love to all of you…

    Aunt Cyndee & Uncle Earl

  7. What fantastic news. I drive to Milwaukee each week and pass HWY CJ by Clyman, every time I pass I say prayers for Charlotte and you all. You are all amazing!

    Kim Kirchberg Lafler
  8. Spring brings renewal and new beginnings, Hopefully with the good news of going home ,this will feel like a fresh start for your family. Auntie Mary

  9. WOW, what great news! Hope all goes well and you will soon be on your way to Columbus! I know this has been a long journey and still more journey to come, but to think that last September all the prayers started and everything is coming together. Keep the faith and enjoy your time at home! Much love from us (and Sonia and Kimmy from Costa Rica who are here at our house in Watertown).

    Auntie Sharon & Uncle Dean
  10. Amazing the progress that charlotte has made. Can’t wait to see you soon in the neighborhood!

  11. Such great news!! Praying for a happy and healthy homecoming for your whole family.

    Steven & Terry Licitar
  12. Have a Happy Home-Coming!

    We are set for our next fundraiser. Monday evening, May 2nd, from 4:00pm to 9:00pm at Pizza Ranch in Waupun. Pizza Ranch generously donates 15% of all sales generated during the event to us, so please come one and all! We are donating this money directly to Lon, Amy, Charlotte & Molly – as well as another family from Beaver Dam going through some tough times….the family of Manny Wilke, a four year old boy born with a rare birth defect of no ears and closed ear canals. He will be undergoing surgery in CA to help restructor and repair his ears and ear canals this month. We are so grateful for our health, and really want to help these two families, so please let everyone know to come to the benefit.

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