Elizabeth Cady

Elizabeth Cady
Our Darling Girl

Sunday, October 10, 2010

Day +18 October 10

Elle is still trying to maintain good blood pressures.  She was back on Vasopressin but came off again in addition to Norepinephrine.  She needed Platelets 3x today already.  So her pressures responded to all this and were up to 102/55 sometimes (whoa -high for her, but funny because almost exactly what mine was at the grocery store yesterday @ 98/55-low for me).  Her MAP (mean arterial pressure -the good perfusion number) has been 55-70s (means she is pushing her blood around well) lately so I asked the resident if she could go even on her dialysis instead of keeping her 10ml up and he said ok.  She is puffing up again and has a blister on her left eyelid, so I hope she can maintain her pressures enough to keep the fluid down a bit!  If anyone out there has any insight on reducing or speeding up repair of capillary leak syndrome, please share.  Thanks.
Blister on her eye-I am not looking forward to lancing this!

Her WBC went down to 0.2. Going the wrong way baby girl! The BMT doc said that her MMF or Cellcept (spell?) may have been calculated at too high of a dose so he adjusted it (using a different AUC for those of you who know what that is).  I asked what this all meant and he said that this drug is an immunosuppressant  and it could actually be keeping the count lower and possibly even affect engraftment of her new cells -I sure hope not.  Keep your fingers crossed.  Come on cells!!  She really needs those cells, her right flank has started to get a little wound drainage goop, and her blood infection may be hanging on.  Docs also restarted Vanco and Tobra (antibiotics she has been on before along with the Merripenem)

So she is doing fine, still trying to open eyes, wiggling a little, and squeezing my fingers (yes, even with the paralyzing drug).  We are trying to keep her comfortable and keep encouraging her to fight and let her know she is loved.  Meanwhile, Grandma is helping take care of the rest of us LOVE our family.
Sweet nurse Jessica and Stefan enjoying Elle


  1. I just wanted to say hello and let you know that I started following Elle's story. I have been following Daylon and Bella, and tonight I read back to the beginning of your blog to get caught up with Elle, too. I know she's a strong little girl, a fighter, and that she's going to pull through!! Oh, and I LOVE the red and white blood cell stuffed animals. Those are great! Keeping laughing at the little things and know that total strangers are out here, following your story and cheering your baby on to health.
    Ft Lauderdale, FL

  2. Hey guys! Sorry to hear that her counts lowered today! They'll be up tomorrow! :) Hey the eyelid blister is NO FUN! Poor baby! We put a rectangular piece of transfer on Daylon's eyelids (along with aquaphor) that went from his eyelashes to his eyelids to help with the pressure of the neuro checks that the nurses do several times a day. They can lift the eyelids open using the transfer. It seemed to help with Daylon, maybe it will help Elle. :)

  3. Hi Becky: Thanks for the update and the picture of your precious little girl. She is adorable, even with the eye blister. I will be saying extra prayers for Elle and hoping that everything goes great on this journey.
    Love your daughter. Love and Peace. Leah's Nana

  4. Hi Becky. I'm praying for those engrafted cells. Prayer is a wonderful therapy, mood lifter, strength provider, request for help from God and many, many other wonderful things. Elle is clearly the best little soul I have ever met. She's so very strong and patient. And she's as cute as they come. May the Lord be with baby Elle, you and your family and may those cells grow, grow, grow..............
    All my love,

  5. Praying for sweet baby Elle!

    Becky (Texas)

  6. Thinking of you.
    Martina, UK

  7. Praying for your sweet little girl.

  8. Have the docs brought up the idea of using Avastin (Bevacizumab)? We tried it with Bella and it did raise her BP long enough to pull some fluid off. They were discussing using it again just a couple of days before she died. It cured a kid of CPS in Japan last year.


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