Elizabeth Cady

Elizabeth Cady
Our Darling Girl

Tuesday, November 2, 2010

Day +41 November 2

Day +40 post transplant and +38 in the ICU. 

Elle still needs all of her blood pressure meds and fluids intermittently to keep her pressures up.  She is still on Prisma for dialysis.  She still can't take feeds in her gut so she is on TPN and lipids (IV nutrition).  She still has yeast although it is taking longer to grow out this time.  She has kind of plateaued. 

She had an abdominal ultrasound because it turns out that she needed a CT with contrast and her kidneys could not handle the contrast even with protective medications.  The kidney docs said NO.  The last time she had an ultrasound, she bled and bled so we were very hesitant to do another, but the Edlings had a great suggestion to use Magic Gel Sheets, a wound dressing that barriers the skin from the probe but still allows the U.S. to get good images.  It worked and she did not bleed, but it was uncomfortable for her.

The chest Xrays revealed no issues with yeast collections in her upper body, but they wanted an abdominal ultrasound to confirm the liver, spleen, kidneys and bladder had no visible yeast colonies (balls).  There were none.  Also, the blood flow in her liver is moving correctly, indicating that she no longer has VOD!  These are both bits of good news. 

However, she has been fighting this yeast for nearly 3 weeks now and she still has these low blood pressures.  I'm getting the feeling that some of the doctors think she is circling the drain.  I don't think so, Stefan doesn't think so, Dr. Tolar doesn't think so, and I don't think Elle thinks that either!  She still moves and looks and squeezes my finger like a little fighter.  She breathes over the vent sometimes, she holds her legs up sometimes, and she even coughed yesterday after being suctioned.   We are not willing to stand by and let her slip away when we know there are still lines that can be changed and solutions to be found.  We are not giving up and I hope none of you are either.  If the time comes when she is tired of fighting and needs to rest and be comfortable, we will help ease her path, but she isn't there now.  Another junctional baby we know was at a scary point several times during his hospital stay and he is doing very well now -yes Daylon, I'm talking about you...We will keep strong as long as it is appropriate to and see what Elle can do.

In other news, Ginger and Destiny are here - yay!  Already, I am getting to bed earlier.  She just so fluidly gets things done as we talk and I was in the bedroom with the girls and came out again and the main room was all clean, dishes done, and laundry done.  I love Stefan's sisters (Don't worry Lis, you are still number one sister)!

Chloe and Destiny are having a great time together too.  Destiny has grown a whole head taller since I last saw her; way taller than Chloe. There was a small mishap in the tub earlier with a little splashing and crying involved, but they both apologized and forgave each other and all was right again.  They are so cute.  I thought Destiny would want to sleep in Chloe's bed with her, but she wanted to sleep with her Mommy.  They are both asleep now, little angels. 

Chloe and Destiny hugging in matching PJs -The girls look like frogs themselves, I am having camera and computer trouble today.


  1. Dawn in Canberra Australia is still storming the heavens on little Elles behalf and not about to give up!Love the girls frog pjs

  2. I check in on your blog daily but have been negligent about commenting lately. The reason to check in daily? To see how to pray specifically for your little one. She is just adorable and I hate that she has this horrible disease. I too think of Daylon and his struggles in the ICU, but love to see pictures now with all the kiddos together. God is good, all the time. All the time, God is good.

    Keep fighting for your sweet baby Elle, she needs you as her advocate. I'm praying for wisdom for the docs and medical team, praying for strength and wisdom for you guys.

    Kim M
    Waterford, MI

  3. Dear Becky: Thanks for the update. We will NOT give up on precious Elle. If Dr. Tolar is still thinking positive, that's a really good sign.
    Hang in there guys, God Is Good.
    Extra prayers for precious Elle. Keep the Faith. Love and Peace Love Leah's Nana

  4. Good morning,.
    Stefan and Becky and darling little girls:
    I am so glad you got her through the ultrasound and with good news! Good on you! Don't give up the fight, Dr. Tolar sounds like a wonderful guy to listen to! I am saying extra prayers for the nurses and doctors, extra prayers especially for Doc Tolar!
    Timea and Destiny are wonderful and so helpful, I am glad, it makes me feel better knowing Timea is helping, she is so clean and so efficient and so nice. And of course Destiny is a little doll! I can just see Chloe hugging her and nearly knocking her over!
    Love, prayers and kisses from Grandma and G.G. We are asking the Lord for healing!

  5. No one here is giving up on sweet baby Elle, she has a host of angels watching over her and a huge base of supporters and prayers being sent up for her each day. Things can not remain as they are, change is coming and you are courageous and strong while you wait during this frustrating plateau. Get rested, get centered and breathe as God shows us all what He has in His plan. So happy to see Destiny's sweet face there with Chloe! And Ginger is such a wonderful auntie and sister. Glad they are with you all and can't wait to see you myself very soon! Love, Lisa Ann

  6. Oh brother where art thou? Thinking about your family, I've called but no voicemail and no answering machine. My prayers are with you all. Love -Adrian

  7. Call me, man! -Adrian

  8. Those doctors just dont know the "stuff" Elle is made of..you do. As long as one of my favorite doctors, Dr Tolar, has hope and hasnt given up...no one should. So continue being her voice. Continue fighting for her where she cant. I will continue my prayers and continue supporting you through my comments.

    Elle- Keep fighting sweet peanut. Sending you strength and my love. xoxoxo

    Denise WI

  9. Becky, no one is giving up on Elle! Heck, just writing "no yeast balls" must be a huge relief. I just keep thinking about Daylon and know that Elle has fight and spirit, too. :)

    Sending you all hugs and prayers!

  10. Praying for Baby Elle to keep fighting - angels are watching, protecting you and helping you to fight on sweet baby Elle.

    Tina in NJ (Bella's friend)

  11. I continue to pray for your darling baby Elle ~ and for strength for your family!

  12. Stefan and Becky,

    I am standing strong with you for Elle's recovery!!

  13. I pray that Elle starts turning around soon and showing those doctors who's boss!

  14. I still believe in little Elle's strength and determination to fight her way back to health!! Daylon is a little miracle baby, and she will be, too =).

  15. dear becky~love and well wishes during this difficult time for you family. thinking of you


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