March 20, 2011. Day +9   8 comments

Sorry for the late post….it’s been an interesting two days. On Saturday morning, I ran home for the weekend to continue working on our home improvements so that they can be completed well before Charlotte ever returns home.  So I am leaving the writing to Amy as she was here for the good times and I was not.

Amy submits:

Charlotte again woke at about noon, but was instantly not herself.  She had not urinated much during the night and began complaining of her belly hurting.  She is so ready for potty-training that she often holds her urine for naps and many hours through the night, so I thought maybe she just needed to empty her bladder.  We also decided to increase her Morphine bolus and provided some to see if it helped the tummy pain in case it was her mucusitis worsening.  Eventually she did have two wet diapers and her tummy pain seemed to go away.  Her weight was the same as Friday so that was good as we don’t want her retaining any fluids.  Grandma Wagenknecht arrived with toys and Charlotte showed immediate interest, so we thought all was good.  But while she was coloring with Grandma, we noticed that she was having tremors in her hands/arms and she again just didn’t look happy.  She actually got mad at the shaking and threw her marker saying “not do it.”  We decided to quick get her into the bath to soak her bottom in case we needed to spend the day cuddling.  While in the bath, I noticed Charlotte had the start of a rash along her shoulders, back of neck, and right ear.  Fortunately, Dr. Diamond was just down the hall and was able to take a look right away.  She thought the rash looked like a heat rash and just wanted to watch it for now.  She also said the tremors could be from her cyclosporine (anti-GVHD medicine) although her levels looked good.

Within about two hours, Charlotte spiked a fever with chills that required more blood cultures.  With the increased morphine and some Tylenol, she rested in my lap for two short naps.  The first nap she was rudely awakened by vomiting up clear mucus from her tummy.  But after the second nap, she was ready to play for the rest of the day.  Her rash continued to spread throughout her body and the spots became raised.  I also noticed that her chemo burn in her diaper area (which had been looking great) also was getting clusters of bumps too.  At 9:45 she was tucked into bed and looked good regardless.

At 11:30pm I changed her diaper before climbing into bed and I realized she was quite warm.  I took her temp….104.9!!!  I called the nurse for more Tylenol and we looked her over.  The rash was spreading even more!!  The residents were told, but still we were in watching mode.

At 5am, Charlotte was again in the 104s and had another mucus vomit episode.  I felt the rash was even worse and her diaper area looked horrible.  She still slept pretty well though regardless and her blood pressures and oxygen levels were great.  I pushed for a resident to see her and I told them that I thought the rash looked similar to the one she got when diagnosed with her Sulfa allergy.  They said to continue observation (as her vitals were good) and to wait to the morning.

I was thrilled when Dr. Diamond arrived in the morning to personally examine Charlotte…..I continue to love that woman!!!  She took one look at the rash and felt it was a medication reaction/allergy.  By this time Charlotte’s diaper area was more swollen and starting to blister pretty badly.  Dr. Diamond thought it looked like a staph infection and that it was probably causing the high fevers.  She consulted with an infectious disease MD who recommended stopping the two most recent antibiotics (Tobramycin and Zosyn) and starting Meropenem instead.  He also felt the blisters were a staph infection too and concurred that we just needed to keep her on Vancomycin.  He would then personally examine Charlotte on Monday.  Dr. Diamond will also have a burn/wound nurse return on Monday to look at her bottom area for recommendations.  We increased her Morphine to 0.5 continuous flow as it looked painful for her to change positions because of the blisters.  Dr. Diamond also ordered a viral nose swab (as Charlotte sounded somewhat congested last night) just to rule out a potential virus.  This is the same test she had in round two of her chemo where they stick a swab up her nose (how fun) and then make her be on isolation until the results come in.  As a result, Lon and I are also on isolation and have to eat our meals in her small anterior room rather than in the hallway like we had been.

If it is staph, we are a little concerned to hear that Vanco is the only med for the  infection as she has been on it for weeks and still got it.  Dr. Diamond says the only way to really get rid of the infection at this point is for Charlotte to start getting some white cells (engraftment) that probably won’t happen until at least day +14.  To try to help, Dr. Diamond is recommending Charlotte get her IVIG tomorrow (instead of Tuesday) which boosts her immune system.  She is also leaning towards her not getting the last dose of Methotextrate (GVHD prevention) on Tuesday as that will only delay her engraftment.  She states that about 50% of kids don’t get the last dose because of an illness/infection and does not feel it will be detrimental to her against the GVHD.

Dr. Diamond (in trying to be optimistic) said there is a small chance that Charlotte could be engrafting (although it would be fairly early) as engraftment can cause fevers and “other weird stuff” to happen.  Again, we just have to watch her symptoms and CBC numbers.  Often children’s behavior and symptoms will improve before white cells actually appear in bloodwork.  Dr. Diamond was thrilled to see that Charlotte was at least awake some of the day, talking, and watching tv.  Charlotte also wanted to drink water today…..something she has not wanted to do for at least a week now.  Charlotte’s congested nose has also improved and we only heard her cough once today.

Charlotte preferred to stay cuddling in bed with me all day, but did enjoy watching movies and taking cat naps.  As the afternoon wore on, we started to notice that the rash was fading and completely left her head.  I even think her diaper area is slowly looking better too.  Unfortunately, she became behind in her Benadryl tonight due to a clot in one of her PICC lumens and we had to wait an hour for a medicine to clear it out and her rash reappeared on her face.  But once the Benadryl took affect, it seemed to instantly clear again.

So……we are really hoping that Charlotte can have a much needed restful night of sleep tonight.  We hope that as the two ceased antibiotics leave her body and the Benadryl continues every 4 hours, that we will see great improvement of her skin.  And we also pray that she will get some reprieve from the fevers.  Without the Tylenol her fevers continue in the 104 range, but with Tylenol they stay about 102ish.

Through it all, Charlotte continues to amaze and impress me.  Anytime she’s asked how she is, she responds “good.”  She has been very understanding when I need to leave her to go eat and use the restroom.  She even gave us some thumbs up tonight.  🙂  She continues to be a fighter and we love to see that in her!!!

Posted March 20, 2011 by L. Elske in Uncategorized

8 responses to “March 20, 2011. Day +9

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  1. Charlotte and Amy and Lon and little Molly, and grandparents, too, I am following your family’s saga (I work in aging services and became aware of Charlotte’s story through a NESCO newsletter), and i am holding you all in my heart and prayers. I don’t know why this has happened, but the resilience of this little girl is astounding – although no more astounding than the strength of her persevering parents. All love and light to you as the spring returns, and prayers for other families in need, as well.

  2. Sorry to hear what a bad weekend Charlotte had. But hope things get better. You all deserve around of applause. You are in our prayers along with others.

    Joe & Sue Kaminski
  3. Prayers for healing Benadryl and antibiotics. So amazing to hear of Charlotte’s great moods, even when her health is so delicate right now. I hope that today brings only good things from the doctors and another good day for Charlotte.

  4. Wow, she’s such a little trooper! I’ll keep praying!

  5. I pray that cJ continues her courageous fight and keeping you all up front in my daily prayers..thank you for daily blogs.

  6. Hi Amy and family. Hayley T. shared your blog with me and I just had a chance to catch up on what is going on. I was in the Social Work program at UW with Amy. Please know that my thoughts and prayers are with you all. I am in awe of the courage, strength, patience, and positivity of each of you. Take care.

  7. Greetings,
    We are amazed at your strength.
    May Charlotte continue amazing everyone.
    We have you in our thoughts and prayers.
    Love, Bill and Mary

    Mary and Bill Kirchberg
  8. We are all praying for early engraftment, let’s hope that’s the cause of the weird stuff. Hugs and prayers.

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