Elizabeth Cady

Elizabeth Cady
Our Darling Girl

Saturday, October 23, 2010

Day +30 October 22

No significant changes -YET.  We are still betting on a turn around with our baby.  She is tolerating all of her treatments. 

There were a couple of mishaps with her right PICC today.  While weighing her (5.55kg), her PICC sutures ripped out and the catheter backed out a bit.  The catheter also got accidentally partially pushed BACK in while the nurse held it  before I had a chance to clean and an X-Ray done -wouldn't normally push back d/t driving more skin contaminants back into the bloodstream.  She did not seem to be in much pain over this though.  Later when Stefan and I finally went to RMH to nap, they re-sutured her.  Having had no prior experience with her skin fragility first hand, the Doc pulled off a good piece of thigh skin when removing her PICC dressing. I am feeling pretty guilty for not being there to help now.  However, now the line is secure and although she has a new wound, her old wounds are healing beautifully.  That is good for infection control if the skin can actually act as the barrier as it is intended!

Today there was a lot of discussion about tweaking her care.  I guess it was found that her yeast was more susceptible to Caspofungin than Ampho B, but one of the research studies I read from Lisa's comment explores the idea that both can be used together without increased risk.  There were also lots of other great anti fungal suggestions and  thoughts that I would like to discuss at rounds tomorrow (today -it is almost 3 AM).  Thank you everyone for the resources and ideas.  The nurse on tonight liked the pro biotic idea and I am going to see if we cant do that through the G-tube and the essential oils thought is worth looking into as well.  Nurse Courtney was also considering other environmental factors that we could control such as changing out the bedding and Bair Hugger more often.  I used to wipe every surface down like lady Macbeth and have kind of let it go more as tiredness, stress, and sadness have started settling in.  Just like I am trying to do with the fungus though, I have to fight that and keep vigilant. 

The new BMT attending this 2 weeks is a man of very few words.  He only said about 5 words today but they were very good ones.  He had the idea to start her on a Statin (cholesterol med -Crestor) which has shown to decrease fungal activity in the test tube.  I like it; he thinks outside of the box!

So she has actually been pretty steady, knock on wood.  BP's a little challenging to keep up, temp OK, counts maintaining.  We have been able to control her pain.  She looks like a sleeping angel -such a sweetie.

Child Family Life, Carin finished Elle's DVD today of lullabies across the generations.  It includes Chloe singing a version of Twinkle Twinkle / ABC, Grandma Etelca singing in Hungarian, my mother singing a song she wrote for Elle, my dad singing a song he remembers his dad singing to him, and me and Stefan singing to Elle.  It was really very sweet.  I played it for her several times today.  It brought both Stefan and me to tears in parts.

Chloe went to the RMH Friday preschool, drew, played, and went to the October birthday party celebration at the RMH. Dad took her and got a few photos.  S is currently with the babe and I am going to retire with the hope of getting to the hospital early.  Goodnight and thank you everyone for caring about Elle.  Obama is coming to Minneapolis and there is a Home game tomorrow.  Going to be a traffic zoo!


  1. Baby Elle,

    You are in my thoughts every day. Get better soon!

    Alexandra in Australia

  2. Sweet Baby Elle - I am a friend of Bella's and I am praying for you too! Stay strong and keep fighting sweet baby and know Bella is watching over you too.

    Tina in NJ

  3. Dear Becky and Stephan, God bless you, you all look tired. My prayers are with you always. I think the probiotics is a good idea if her care team/physicians think it wouldn't interfere with anything. They have helped me for my IBS. Not the same thing, but they seem so harmless. Air and light are good also. Has anyone suggested some vinegar baths especially near or on the IV sites? Maybe even watered down vinegar would be effective, especially when she has a fever. Just a thought I had since I use it for a fungal infection I have. I'm sure you have lots of good medical advise coming in so, I'll let you go. Get some sleep if you can. Kathy Schiffer

  4. Last night was the Advance Commitments Dinner for the capital campaign at church. I was lucky enough to sit with Marla. We chatted about you guys and how much we love and miss you. :) And if you haven't seen them, Elle appears in the campaign video: http://www.stjohnslc.org/videos-0


  5. I was on my way home and my thoughts turned to Elle. For some reason I started to think about the probiotics and this overwhelming feeling came over me. Basically the feeling was this, "Use the probiotics. Push the doctors if you need to. Even if they think there is no point. If it isnt going to harm her use it." I had to get on and tell you this and once I decided to do that the feeling passed. :)

    Elle- Sending you my love and lots of strength to keep up the fight. xoxox

    Denise, WI

  6. Dear Pops,

    I have been following you for some weeks now and came to you here via the Ringgold family. I made my first comment on Bella's blog around September 20th (ish), which now seems a million years ago. I would just like to add my heartfelt support to Elle as she carries on her battle. Those brown eyes of hers are amazing, like little pools of wonder and optimism.

    I think something remarkable is happening here. Despite the devastation of Bella's loss and despite Elle and Daylon's extremely rocky journeys, there seems to be a bit of a mass movement locking onto Minneapolis from the internet. All walks of life are now walking with the children who must undergo this treatment in the hope and belief that better days are soon to come. It breaks my heart that your baby daughter is there but it soothes my soul to see that there are very many people in verbal (and silent) support of Elle's progress.

    I can't truly imagine the pain of this journey for you (I think only those who have travelled your road can honestly say they know how it feels) but I can try to imagine my shouldering a bit of the burden for you. So, I would like to do that for you.

    Many fond wishes,

    Jane (Vancouver, Canada)

  7. I'm friends with the Ringgolds and they alerted me to your fight. We are with you here in Detroit wishing you the best. God bless you all.

  8. I have a little 17 month old, Elizabeth (we call her Liesel). She is Bella's Cousin. I am following your blog and sending you all our best wishes and energy and love. Your baby has the most beautiful eyes.
    HUgs to you all, Heike Ringgold.


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