Elizabeth Cady

Elizabeth Cady
Our Darling Girl

Thursday, October 7, 2010

Day +15 October 7

Today is Baby Elle's 10 mo birthday!! Happy birthday sweet girl! Every month is a celebration now.

She continues to open her eyes, but not tracking or focusing.  We hope her little brain was not affected by those super low pressures last week.  Her nurse was not worried although she was not perfusing oxygen carrying blood well for a long time and the next day she went into acute kidney failure and needed dialysis. Her bilirubin ~17 down from ~19.

Her AM weight was 6.8kg and her evening weight was 6.0kg but we aren't sure if the morning wt was accurate.  She has not peed yet which she needs to do before they consider reducing dialysis but does look much less puffy, less wound drainage.

She is chewing through platelets like crazy and gets platelet infusions (pushes) ~twice daily. Hemoglobins are stable. Her blood pressures today keep dipping down on to 70s over 30a, even as low as 60s over 20s and mean arterial pressures (MAP) in the 40s.  They want the MAP in the 50s, it is a measure of perfusion (the blood circulating with oxygen around the body).  She had to get fluids increased then finally her Epinephrine was increased. 

Her blood infection was identified to be Pseudomonas (no surprise) AND another uncommon bacteria called Achromobacter.  They are both treated by Merripenem which she is receiving.  Her temperatures are still very low sometimes 93 or 94 degrees still, but we are able to bring them up.  The Prisma is the likely the culprit but also, the sepsis may play a role becuase her immune response post BMT is altered.

Good news; her counts are 0.3! Her immune system is sloowwly starting to rebuild - yes! And she got a visit from Dr.s Tolar AND Wagner today (love those docs).  They were actually pleased with her status as was Dr. Cooy, the current BMT on service.

I enjoyed Elle much of today and Etelca, Stefan, and Chloe enjoyed the beautiful indian summer weather.

Chloe gravitates to animals, she said "I miss my doggies"(so does her Mama!)

I know she looks bad and it all sounds dismal, but she is holding tough and she has so much spirit; you can sense it when you are near her.  I have such hope and such a positive feeling even through this scary time.  I feel God with us and Elle's Angels around her.


  1. Please know that we are praying for her in Florida. Hugs!

  2. Extra prayers for your precious daughter. These EB children have a special spirit about them. I love them all and pray every single day for a cure for this awful, awful disease.
    I am sure that my granddaughter, (Leah JEB) is with Elle all the time. She will protect your precious beautiful daughter.
    Love and Peace. Love Leah's Nana

  3. I'm so surprised to read that Elle is opening her eyes! What a resilient little girl! Daylon didn't open his eyes until his sedation had been lowered for a couple days! She's a fighter alright! :) I'm glad to hear that Dr. Wagner and Dr. Tolar came to visit you. They are such wonderful, brilliant doctors. Just think! This time next week, you may start to see improvements in her skin!! We're keepin' the prayers coming! Love, Jennifer

  4. I'm praying from South Dakota that God may grant healing for Elle. 'Praying for strength for her loving family as well. EB care is such a family affair. Praying that God will lift you all up. Beth

  5. HAPPY 10 MONTH BIRTHDAY ELLE! We wish you many, many more!!!
    Love you lotts,
    Auntie Timea and Cousin Mikayla

  6. Becky, just figured out how this works now. Here's tons of love for you and your lovely Elle. Also blessings and love for Stefan and Chloe. You are so much stronger than I ever knew. I am praying for you all and know God is there with you through this amazing time. Email me when you get a chance.

  7. Praying for your beautiful baby!

    Becky (Texas)

  8. Praying for sweet baby Elle, she may be small, but she has a strong spirit, and she WILL make it through this time in the ICU, and get back to the BMT floor. I know that Leah's Nana is right, our Beautiful Butterfly Angel Granddaughter Leah is with your little Elle,and also Bella, Daylon, and Peyton, as they are going through their EB/BMT journey.
    Prayers & healing thoughts from Bowie, Maryland, Judy T. (Leah's Grandma)

  9. Hi, my name is Carla, I live in Portsmouth, Ohiio. I came across Elle while I was following Bella and Daylon. I'll add Elle to my prayers, also. These babies have touched my heart.
    I've been a nurse for 34 years, but always cared for adults or elderly. This is a really new for me. I pray that Elle continues to get stronger, and beat this thing. She looks like a happy little girl. Bella is watching over her. Thoughts and prayers, Carla


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