Elizabeth Cady

Elizabeth Cady
Our Darling Girl

Wednesday, October 20, 2010

Day +27 October 19 & Day+28 October 20

Day +27: Had a better day -was stable with pressures and temp.   They did her Dialysis circuit change and her temp soared over 103! The dialysis keeps her temps way down all of the time so fevers are not spiking while on the circuit, but every time she comes off, the temps go up.  This was the highest by far though.

She got all of her dressings done and what is good in regards to her skin is that I have been slowly opening up more and more areas to air.  I place her limbs on a burn pad called Exudry (a tip from her primary nurse)with a little Mepilex Transfer directly on the pressure areas and "tent" the bedding so it is not in direct contact.  She now has all four limbs, both hands, and one foot exposed and they are all looking SO much better!! I also have a cup of air (O2 blow-by) blowing on her armpits and ketokonizole (antifungal) on the "cheesey" areas (sorry-gross).  I was never able to do this before because she moved so much and traumatized her wounds further.

Later in the day, we were honored to take part in a balloon release for Anabella, symbolic of letting go and setting her spirit free. It was beautiful and even included a short but poignant ceremony andher dad played Amazing Grace on a woodwind instrument. We watched the balloons float off into the skies, further and further into the distance.

Day +28:  As a continuation to the above, we attended Bella's memorial service this afternoon.  I never imagined that there could be such a beautiful service with not one floral arrangement.  The family wanted donations to go to PUCK for EB in lieu of flowers.  It was held at the conservatory at the Como Zoo with glass all around gardens and a Koi pond and the wind whispering through.  There were several nurses and respiratory therapists, family, the Edlings, and others present. The service was lovely and consisted of scripture, poems, an interactive portion that Stefan and I participated in, and lovely acoustic music.  The Ringgolds delivered flawless, gorgeous Eulogies and were so strong; they were the only ones holding it together.  I was very impressed and moved.  It was pretty tough, but such a meaningful tribute to a special baby.
Our special baby is fighting.  Her yeast dug it's fungal teeth into her and does not want to let go!  She is still growing out the yeast quickly and frankly, it's scaring the bajeezus out of us.  Her blood pressures have been soft and she is back on 3 blood pressure meds again. Her temps get low again and these are indicators that she is sick from the infection.  Also, yesterday her temperature probe that goes into her esophagus slipped out and the edge was cutting up her mouth and maybe her esophagus.  But her mouth had no blood today. The same principles still apply; prayers help the white counts to help her immune system to help the antifungals to help her. 

Another phenomenon that has happened today is that she has been so awake.  We could not knock her out.  She was wiggling and moving and looked uncomfortable and maybe scared.  She got more agitated when she heard my voice but calmed down almost instantly to touch, so I shut up, held her hand, and gently stroked her forehead.  Poor baby.  The nurse finally got her quiet and asleep with sedation. 

Keira, Ali, and Chloe in "cooking class"


  1. Praying for sweet little Elle, from Bowie, MD
    Judy T.(Leah's Grandma)

  2. Praying for your sweet baby girl to beat that nasty fungus!! Fight, baby girl!! Sending our love and prayers to Elle's amazing family as well!

  3. We know that Elle's a fighter and will conquer the fungus infection! :) I'm sure as her counts climb higher and higher over the next couple of days her body will come back to a healthier, happier state. Keep up the great work, Elle! You can do it! Love, The Edlings
    PS- Love the pictures of our little cooks!

  4. Your whole family is in our thoughts and prayers. Praying for Elle to get healthier and stronger.
    Melody from CA

  5. Praying for your beautiful little lady again tonight. God be with you all. Keep fighting with those wonderful new cells Elle!

  6. Prayers prayers prayers for you all but especially little Elle. Dawn, canberra australia

  7. Strength to Elle bear's immunine system and may she fight that yeast and overcome it. Let that blue bird of happiness sing out over Elle and protect her. Sending all the strength and love, and hope your way

    Houston, TX

  8. Sending love and prayers frm South Florida. Stay strong sweet baby Elle!

  9. Kisses to your amazing girl.

    Coming via Bella's blog to say hi, and say keep going, keep going.

  10. Praying for you Elle! Be strong, beautiful girl, there are many many people out here holding you up in prayer.

    Julie in Maryland

  11. Dearest Elle, you sweet girl,

    Keep fighting, the world is at your feet! I hope you will recover quickly from the fungal infection and that your BMT road won't be too bumpy from now on. I don't know any of you EB families in person but you are all in my thoughts every day.

    Alexandra in Australia

  12. Sweet Baby Girl Elle,
    Keep fighting little one - you have no idea how many lives you have touched in your journey. I am praying for you as you fight this fungal infection, praying for your family as they tenderly care for you and praying for the medical team. Praying they have wisdom along with the knowledge to best care for you.

    God who created you also sustains you and knows every little detail of your little body. Nothing catches Him by surprise.

    I pray for you even when I don't comment - Loving and praying for you in Waterford, MI
    Kim M

  13. Hello...Just wanted to send our thoughts and prayers your way and let you know we are thinking of you and Elle. She is a beautiful little girl and so strong. Hoping her infection comes under control soon and she can begin to move forward. Please take comfort knowing that your family is thought about every day by people who you have never met. Stay strong ...Hugs, beth, john, casey (RDEB), Becky nd zach Neikens

  14. Praying for you sweet little girl. Hang in there Elle, the EB prayer warriors are out here praying for you. We love you so much little girl.
    Extra prayers for adorable little Elle. Love and Peace. Love Leah's Nana

  15. Praying for your sweet baby!!!

    Michelle in KCMO

    Thanks to the Ringgold family for linking me to your blog

  16. Dear Pop Family,
    You and Sweet Elle are in our prayers for healing, strength, patience, and faith. We are an EB family, so we greatly admire your courage and fortitude in participating in BMT... your journey will benefit so many EB children in the future! We keep you close in our thoughts.

    Pete & Adrienne, Elizabeth (9), Patrick (7), and Sweet Caroline (5 - Junctional non-H EB)
    Palatine, IL

  17. Hoping for Elle to get through this.
    I did find some evidence for using capsofungin in invasive fungal infection...but that drug is not without risks, but this paper found that combining caspofungin with Amphotericin was as safe as using Amphotericin alone:
    Randomized comparison of safety and pharmacokinetics of caspofungin, liposomal amphotericin B, and the combination of both in allogeneic hematopoietic stem cell recipients.
    Groll AH, Silling G, Young C, Schwerdtfeger R, Ostermann H, Heinz WJ, Gerss J, Kolve H, Lanvers-Kaminsky C, Vieira Pinheiro JP, Gammelin S, Cornely OA, Wuerthwein G.
    Antimicrob Agents Chemother. 2010 Oct;54(10):4143-9. Epub 2010 Jul 26.
    I suppose it never hurts just to keep everyone's mind wheels turning and thinking of alternatives, so I thought I'd let you know what I found.
    Thinking of your family,


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