March 21, 2011. Day +10   15 comments

Charlotte slept pretty well throughout the night.  There were a couple of times in the night and early morning where her temperature hovered around 99.5-100.  She woke up with another large rash on her face-this one looked different than yesterdays rash which was clearing up by the end of last night.  She was feverish (103) again when she woke up at 11am and looked pretty puffy.  The wound nurse showed up and recommended a dermatologist consult.  In the meantime, Dr Diamond came in and thought her face looked like a petechial rash, very common in patients with low platelets (this was one of CJ’s signs at diagnosis time).  She received a platelet transfusion yesterday and her numbers were again low this morning so it made some sense.  Dr Diamond also thought that her diaper area rash/blisters were congregating leading her to think that it may be a symptom of a herpes infection.  So the infectious disease doctors were also called for a consult.  In the meantime they increased her acyclovir to three times a day instead of two to treat a possible herpes infection.

She has also started to feel the effects of her coughs now.  We think she must be moving some mucositis around in her throat and mouth when she coughs because it results in a pretty lengthy cry of pain now.

She received a platelet transfusion this morning.  And we just hung around until some of the consults made an appearance.  The infectious disease consults came and thought it could be many things.  Herpes, staph infection, engraftment,viral infection, medicine allergies.  And they wouldn’t do much until the dermatologists gave their opinions.  One dermatologist showed up and took a look and thought that her diaper area did not look like herpes, but recommended a skin biopsy to figure stuff out.  He also called the head dermatologist for his thoughts.  Both of them showed up a bit later and started the skin biopsy procedure.  I won’t go into too much detail, but they cut out one of her blisters in her inner thigh area and also a chunk of skin from her tummy area to have biopsies run.  Both of the areas were rashy, and looked different so there may be several different things going on here.  The areas for the skin biopsy could bleed a lot so they also gave her another bag of platelets after the biopsies were done.

She was pretty miserable today.  Since the two lower temperatures this morning, every temperature that was taken was over 103, often as high as 104.9.  And she is already at the maximum amount of tylenol she can get so she is not getting much relief when it stays that high.  All of her blood pressures have looked acceptable, but with the high temps comes high respiratory rates and high pulses-those have been in the 170s to 180s most of the day.  We increased her bolus and basil morphine amounts and eventually she seemed to be in better spirits so we figure she must have been in some serious pain for a little while.  Today she never left her bed except to get weighed…which is becoming another source of concern.  Today she weighed 14.8kg…up .5kg from yesterday.  She is now starting to retain some fluids, which could be a sign of several things also.  They gave her some medicine to make her pee (Lasix), and some other medicine to try to get her blood vessels to give up some of the fluid back into the bloodstream and then some Lasix again…so all of that is pretty worrying too.

They are still planning on giving her the IVIG treatment tomorrow and there was question about the last dose of methotrexate still.  After the long day Charlotte had, the attending doctors came in and said they had talked with Dr DeSantes who is out of town this week.  He believes it could be engraftment syndrome and the treatment for that would involve steriods.  But they won’t give any until they get a negative viral result from her skin biopsies as giving steroids to a viral infection could make it worse.  We are hoping to have some answers from the skin biopsies as early as tomorrow night.  The internet can show some scary things about engraftent syndrome so we are not sure what to hope for yet.  The doctors think there is also no reason right now to not give the last dose of methotraxate tomorrow so we may be on for that.

She has been a really brave trooper through all of this.  We have watched Horton Hears a Who half a dozen times today (thanks Aunt Jenny and Uncle Lyle!) and she has laughed at some of the funny parts.  She even told us tonight to turn off the TV and that it was time for bed so she is still being cute as heckfire!  Tomorrow’s IVIG and increased acyclovir run will probably result in a need to access her port again so we hope that goes well.  Her diaper area blisters are so bad that we haven’t had a diaper on her in over a day.  She just lays in bed with a chuck pad and a diaper underneath her and when she goes, we try to collect as much of it as we can in those.  Collecting it all is important because they closely monitor her intake and outputs to watch for signs of more serious problems, so each diaper is weighed before it is thrown out.

We are hoping and praying that tonight is restful and that tomorrow brings a healthier Charlotte, and test results that are desired.

Posted March 21, 2011 by L. Elske in Uncategorized

15 responses to “March 21, 2011. Day +10

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  1. Sending you all many prayers and thoughts for better outcomes tonight and tomorrow. Keep positive !!

    Jim & Bunny Gitter
  2. Many prayers are coming your way. Be strong…..and hopefully tomorrow will be a much better day. Much love…

    Auntie Sharon & Uncle Dean
  3. Gosh, what a miserable day for Charlotte and coming off of a rough weekend too…I’m so sorry…tomorrow has got to be a better day. Happy to hear you got a few laughs today though. Charlotte is handling all of this so well, mommy & daddy too. Praying for better days ahead.

  4. Praying for better days ahead. You are all so strong and
    CJ is such an unbelievably good little trooper. May God bless you. Am praying for a good night’s rest. Love Aunt Terry and Uncle Steven

    Steven & Terry Licitar
  5. Sending lots of love and hugs from NESCO!

    Cheryl Batterman
  6. Praying for a better day! Hugs!

  7. Our prayers are certainly with Charlotte and her Mom and Dad. We had been told there would be bad days but I think we all hoped that Charlotte would miss those and the transplant would take easily. Life is not that way and the Lord wants us to be aware of that. God bless and hopefully the bad days will soon end and the transplant will take over for a healthy life for Charlotte. Much love ……

    Uncle Jim and Aunt Judy
  8. Thinking positive thoughts and sending lots of prayers for healing and better days.

  9. Hopefully Charlotte and Dad & Mom have a much better day today. Hope they find the cause of this soon. Hang in there.

    Joe & Sue Kaminski
  10. Thank you for sharing even the tough stuff with us. We all will continue to pray for Charlotte’s recovery – and as long as she comes out healthy, a few rough days are worth it. Try to keep strong and enjoy the extra cuddles with Charlotte now. Hoping for a good day today!

  11. Sounds like a really tough day yesterday. I’m hoping today is a better day that brings with it good answers to all of the problems she’s having to suffer with and that they can get her feeling better quickly. She does sound like quite the trooper!

  12. Thought of you all many times today.. when I did I prayed.. xo

  13. Thinking of you often and hoping for the best. So much for a little one to go through. You two also.

  14. Thinking of you all and sending prayers your way.


  15. Come on Charlotte, you can do this. You have already made it so far. Get through this icky stuff and on the road to full recovery. We are praying lots these days for you.
    On a side note, Avery mentioned your name on Sunday. He said something to the effect of ” go to charlotte’s house to play?” I told him soon, once you feel better. He said “charlotte have a tummyache?” I said something like that. He then said “she get better.”
    Hugs and prayers.

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