Elizabeth Cady

Elizabeth Cady
Our Darling Girl

Monday, October 25, 2010

Day +32 October 24

Baby Elle is hanging in.  They stopped the vecuronium (paralytic) and did a trial reducing the vent rate to see if she could handle it and in the words of the ICU Doc, "It failed miserably".  She became acidodic at her her first blood gas, meaning she needed to be on the high rate of the ventilator to maintain her body's safe PH.  That is OK, she just isn't ready for that.  It was decided to keep her off of the veck though.  We thought she moved while on it -wow, she really moves without it; hands, arms, shoulders, legs, head.  And she opens her eyes wide, looks at us with focus and clarity.  She is still so much IN LIFE, very much with us and fighting to be better.  Even the Docs say she has an amazing will and fight considering what she is undergoing. We love that, but still want her sedated for comfort and protection of her breathing tube and her wounds.  She still gets agitated and calms when I (or her dad) hold her hand and when I put my hand on her head.  Today, I just wanted to be next to her, available to hold her hand for most of the day.  I am at RMH now and wishing I was with her.   I may go keep S company after this.

So she is off of dialysis for 12 hours right now to free up a line so that each port can be alternated doing the Ampho lock.  Anti fungal will be flushed and locked into the line in hopes of killing any fungal colonies or bio-film from each catheter.

We are going to continue to rack our brains.  These Docs have big, knowledgeable brains, but they think about Elle for part of a shift and she is on mine and Stefan's mind 24 hours a day - yes even in sleep.  I dreamed that I fell through a water bed that became a deep, gel pool and that I had difficulty reaching the surface and my brother's resin covered painting that he had created 20 years ago fell to the bottom of the bed pool and was nearly ruined.  I felt so guilty about ruining the painting and felt very worried that other people, especially kids would fall in to the gel pool too.  I really am trying to come up with a good gel-type pillow for Elle to keep her skin safe and make her comfortable, and I am afraid of failing her. I think that is what that crazy dream means.  It occured to me today, that if this was the president, there would be even more creative interventions until the president was cured. So in my mind, our baby is "Ellebabma". She is our VIP and we are going to keep pooling ideas until we think of something brilliant together with the care team and those of you who are giving us great suggestions as well.

Stefan and I are doing ok though.  Dad really helps, Chloe helps, and everyone's prayers, love, and warm thoughts help. 


  1. Steve and Becky,
    Thanks for keeping friends and family up to date with sweet Elle. Wishing you better days ahead.

  2. Thinking of Elle and wishing that in a near future she will be home safe.

    carla form Luxembourg

  3. I keep thinking of Elle every day. I wish I had some input to contribute with how to fight her fungal infection but I don't. The only thing I can do is to wish with all of my heart that she will improve soon.

    Alexandra in Australia

  4. Hi Becky: Thank you so much for updating. I know that you would rather be doing a million other things but we all appreciate you taking the time to update. We are all praying for your precious daughter.
    Keep the Faith. God Is Good. Please give Elle a big hug and kiss for me. Peace and Love Leah's Nana

  5. We are sending lots of thoughts and prayers your way! I believe that Elle can fight through this too!

    Julie Williams

  6. So glad to hear Elle is hanging in. Thinking of her and your family.

  7. My prayers are with you.

    Bellla's Grandma Carolyn

  8. Becky, I asked around and one of my nurse friends suggested this:


    They come in several sizes and shapes, too.

  9. Sending positive, healing thoughts your way!

  10. It's my first time on the blog. I came to know you reading Bella's blog. It's nice to see how the EB family give comfort to each other.
    Praying for Elle and your family.

  11. Colloidal Silver Uses: Colloidal Silver for Burns | Purest Colloids
    Colloidal Silver for Burns. Because of silver's antibacterial properties, colloidal silver has been found to prevent the infection resulting from burns

  12. Having a hard time posting for some reason...the website is acting funny (at least for me). Always remember you are one amazing mommy doing all that you can for Elle. She is one lucky little girl to have you. I just noticed the picture at the bottom of this page...those eyes. Oh those eyes.

    Elle- Sweet baby girl. Thinking of you and sending you all my love, sweet kisses and lots of strength. xoxox

    Denise WI

  13. Hi, it's Rafi's dad, Brett. Sorry we didn't get to meet at bella's memorial. Anyway, take a look at z flow pillows. The z flow pillows are very good. We've used them before. I saw that Hennepin county hospitals have a standard way of sanitizing them so perhaps fairview has them. The are gel positioning pillows that are also good for circulation.

  14. Sending you love, strength, comfort, and sleep from California! We live in Daylon's neighborhood and have followed him, Bella, and Elle through your blogs. We never stop praying for all of you!


  15. Hi, my name is Tanya... I was Bella's nurse in the NICU, and Daylon's nurse shortly after :) We use these pillows called "Z flo" for our babies, they are great for preventing breakdown... I have sanitized them and used a large one under Daylon during his surgery in the OR. I have followed your blog for a while, after being introduced by Bella and Daylon. I think of you often, and wish you strength and love from California!!



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