March 22, 2011. Day +11   7 comments

Last night got pretty interesting.  At midnight Charlotte needed three different thermometers before one got a reading of 105.3.  We gave her some tylenol and Amy and I started putting wet washclothes on her

here's the rash on her legs, it's the same all over her body

body.  She was still talking to us and very feisty as she made sure we didn’t put any on her head.  So we spent an hour with rags on her thighs and tummy.  At 1am the nurse took her temperature again and it was down to 100.7.  So we took the rags off and tried to get some more sleep.

Her temperatures at 8am were a much happier 98.3, and she woke up around 11.  By noon her temperature was back to 101.5.  It stayed around the 102 range most of the day.  Her rash on her face looked the same as yesterday morning, but we noticed her diaper area blisters were starting to dry up.  They really looked much better than yesterday.  Still not pretty, but a big improvement.  The rest of her body rash was at least as bad as it was yesterday and this morning she started itching at various places, mostly her eye areas.  She seemed pretty uncomfortable with it and Amy and I had to beg her to stop scratching it.

Her weight was a pretty big concern again today.  She was up 0.8kg today.  Yesterdays ins and outs were representative of that at 1900ml in and 900ml out.  So she is starting to really retain some liquid and the doctors and nurses will have to watch that closely.

A new dermatologist resident stopped by to announce some findings.  The tummy area skin biopsy showed nothing obvious.  So it could still be a viral rash, medicine allergy, or engraftment rashes.  They may decide to take another biopsy at some point if it doesn’t get any better.  They decided that the sample that included the blister from her diaper area could show some signs of herpes, possibly viral.  So to be sure, they wanted to take a swab of the blistering area and run some more specific herpes type tests.  The sample was nowhere near as invasive as the biopsy so we easily agreed.  If these tests confirm it, it could explain why the areas are already starting to improve-Dr Diamond had us increase Charlotte’s Acyclovir from prophylaxis to treatment amounts on Sunday because she thought it looked like herpes.  So this may be working to fight the infection.  The dermatologists hope to have more answers in another day or two.  So the hemoc doctors did not start any steroids to combat any possible engraftment syndrome that may be causing some of the rest of her discomfort, rashes, fever, etc.

tired, but still pretty happy playing.

first time standing in three days

Tonight we noticed that CJ did have some blood in her eye, it looks like a burst blood vessel.  Our night nurse said that this could be serious so he thinks that someone should be looking at it tomorrow morning.

She did have a few more potty diapers for us tonight so the Albumin and Lasix look to be working a little bit.  Tonight her stools have become very loose and watery.  It’s probably more mucositis making its way through her system.

At about 4pm Charlotte surprised us by agreeing to lay on our laps in the recliner and we actually got her out of bed.  This was the first time since Saturday that she was out of bed at all.  And by 7pm she was requesting to play puzzles at the couch.  So Amy and I watched her as she stood and played as she has the first three weeks here.  It was a very happy moment for us.  Her rash is still pretty obvious, and her temperature tonight was around 100.6 so we like that more than yesterdays 103s and 104s.  We will see how she does tonight, since it usually gets a bit worse then.

Posted March 22, 2011 by L. Elske in Uncategorized

7 responses to “March 22, 2011. Day +11

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  1. It breaks my heart to see pictures of CJ and read the blogs. But…she seems to be tolerating it pretty well and you guys are doing AWSOME!!! Stay positive as her doctors do their magic with the medicine on her.

    Love, hugs, and prayers. Ma Kaland

  2. How can we not feel positive , when you folks are doing so well at keeping us informed. Sure it seems like an uphill battle, but Charlotte is worth it, with her smile and thumbs up. Praying this will soon be easier on allof you. Love from G’ma & G’pa E

  3. Wow, you said you’d be in for some rough days and I sure hope this is the worst of it. Don’t they always say things have to get worse before they get better? Still, poor little thing! She’s a trooper, though. I’ll keep praying!

  4. Lon & Amy,
    I am truly glad to hear runny poops and stuff in a way that surprises even me. I’ve always known on an intellectual level that Charlotte is a precious child of God, but reading about rashes makes it more real for me. I feel a stronger connection, and I think my praying is more focused.
    May God bless you in all the details of taking care of Charlotte. May God bless you as you grow closer to each other in the process. May God bless you as you try to give attention to both of your children and balance the many demands on your time.
    Our love to you, Jim Cotter

  5. Lon & Amy, As hard as it may be right now, when you reach the top of this horrendous mountain you are helping Charlotte to climb, there will be so much joy and laughter, all of which has truely been earned many times over!! Always in our prayers! Love Tom & Debbie

  6. Lon Amy & Charlotte It is hard to take everything in stride,You all have been so courageous, and although it is hard to focus The Lord will give you strength, as we continue to pray for better days ahead. Love XOXO Auntie Mary

  7. We’re praying for Charlotte’s difficult days to be behind her soon, and that all of you continue to be blessed with the strength and courage to continue on this uphill battle. Charlotte is a remarkable little girl who is part of a remarkable family. Lots of love to all of you…

    Aunt Cyndee & Uncle Earl

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