November 5th, 2010   6 comments

Another “Thank you” to everyone that was involved in one way or another with last night’s fundraiser.  The turnout was fantastic, and the music was LOUD, and the people were great.  Thank you to all of our family, co-workers, and friends who helped put all of it together, and also those who came out and showed their support.  Thank you to those who couldn’t make it to Madison, but wanted to be there just as much.  And remember, the Clyman Lions club is throwing another event on December 4th with drinks, music, and auction items as well!  The Clyman hall has always been a big part of the Elske’s lives so it is only fitting it should be held there.  More information here:

http://www.webspawner.com/users/charlotteswebofhope/

Today was a different sort of day.  Charlotte was still having problems with a high respiration rate and her oxygen/blood levels were down to 87-89% instead of 95-100% for the third or fourth day in a row.  All the doctors felt that it was related to her fever, but sometimes it didn’t get a lot better when she was down to a regular temperature.  Her chest x-ray from a couple of days ago showed nothing significant, but the doctors are now saying that because her white blood cell count is so low, infections may not show up on the x-ray like they hoped they would.  So they ordered a CT scan which would tell them more.

In the meantime, Charlotte was still acting like herself.  She was very happy to sit in her room and play most of the morning and drank pretty well and seemed very normal.  The CT scan was at 1pm and we didn’t find out the results until about 3pm.  They said they found something on her scan that didn’t look normal, perhaps some sort of infection.  Could be bacterial, viral or fungal.  The only way to find out which kind it was, and therefore how to treat it, was to perform some procedure called a bronchoalveolar lavage in which they pass a tube down into her lungs and squirt saline solution into her lungs and pull out some of the fluid, hopefully also pulling out a sample of the infectious material so they can run tests on it to see what it is and what’s up with that.

This procedure needs to be done under sedation and the earliest they could get us into the OR was 9pm Friday night…so we went with that.  We also found out that she can have some of her other unfriendly procedures done while under such as her port re-access, collecting a urine sample and a nasal swab (to look for upper respiratory infections or flu-like sicknesses).  So hopefully we can just get all of this done and be finished with poking and prodding her for a little while.  But the doctors and nurses are still confused because her attitude and activity level doesn’t tell them that she is infected.  Her lungs still sound very clear.  She is not coughing or sneezing like a regular sick kid…so nobody knows what to think.

Of course, the news is not all rosy:)  Since the samples collected in the procedure will need to be sent to the labs to grow bacteria or fungus, we will probably not find out any real results for at least 12 hours,  quite possibly early next week.  So after she returns (I am writing this in the OR waiting room, 9:15pm) to her room they will put her on a couple of new medications for antibiotics and antifungal treatments.  If the lab samples show something, then we can continue the proper medicine and (hopefully) discontinue the non-needed ones.  Then she should start getting better.  But they did say that 2/3 of the time they don’t really find anything specific and that they could maybe just write it off as some sort of “bug” as well.

But wait, there is a little downside to this whole thing:)  Standard procedure for the nasal swab is to consider the patient infected and, therefore, contagious.  So once she returns to her room, our little traveler will have to be confined to her room so as not to infect the rest of the immuno-compromised children on the floor until the test results come back saying that she isn’t sick with the “swine flu” or other such stuff.  Unfortunately it is a Friday night, so that means the test results won’t be back until Monday afternoon at the earliest…so CJ will be spending at least the next two and half days in her little room.

But Mommy and I are so proud of her.  Even with an elevated temperature, and after the week she has had, she has been very good to all the doctors and nurses.  She only cried about 5 seconds during the entire process of removing her from her room, transporting her to the UW OR, and prepping her in the OR prep room.  She is getting so used to all of the processes here that it is scary to think how young she is and how normal this is all seeming to her.  But we won’t be here forever,  and she will have a different life in half a year or so, and she won’t remember much about this we hope.

Posted November 5, 2010 by L. Elske in Uncategorized

6 responses to “November 5th, 2010

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  1. We continue to pray every day for Charlotte and your whole family. You truly are strong and terrific parents.

    Jim & Bunny Gitter
  2. Sorry we couldn’t be there last night. Sounds like it was a great sucess.

    Praying for good news to come quickly. It’s always amazing to hear what a “trooper” Charlotte is, though! Sleep well tonight. God bless.

  3. That little peanut is just amazing,as always, you’re constantly in our prayers

    Darren & Vicki Weinberger
  4. Here’s to hoping for good results and a quick weekend. Hugs and Prayers! Theresa

  5. It will get better for you all. The paper clipping was great article I crieded like a baby. ( for happiness) hopefully we can make the next benefit just need direction) Lynn it was so nice of you to make that long drive. God Bless you all

    Joe & Sue Kaminski
  6. I’ve never met you all-but, I used to work w/Grandma W.
    My Wed night Bible study group is praying for Charlotte and your family. Please remember Isaiah 43:2 When you go thru deep waters and great trouble, I will be with you…

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