Elizabeth Cady

Elizabeth Cady
Our Darling Girl

Monday, October 4, 2010

Day +11 October 3

Woke up to rounds in progress. A dialysis machine and kidney doctor already in the room.  OK -at least Stefan knew a little about what was happening.  Apparently she was in acute renal failure duing the 3 hours I slept.  Getting the feeling I shouldn't sleep. 

So they tried to start her on continuous dialysis to pull off excess fluid and filter her kidneys for her.  It is gentler on her system than intermittent dialysis and it is called CRRT or PRISMA for the name of the machine used .  Her dialysis catheter (her Hickman or central line) would not work with the pressure of the machine.  Tried much of the day to make it work to no avail.  Kidneys in trouble and needed diaylysis so emergency line replacement needed.  

I had to change into scrubs and accompany her to OR for an unplanned surgery, but it was needed.  The surgery team was great and let me in to open her dressings, and re dress her after.  Surgery was difficult because of her skin and swelling and other complications.  The surgeon said it was a near disaster, but he got the line in and it works very well.  Some damage to her chest was unavoidable considering that a big "hose" had to be removed and another put in its place but I think he was  more disturbed by it than we were. 

I have to mention, the surgery was long and at first uneventful. As things sounded more tense in the OR and the surgeon started asking for another line, demanded more pressure and more suction and his ears turned red and blood started to fill the suction reservoir, I pictured Elle.  Not lying on a table asleep with traumas and troubles, but smiling with big eyes and playing and looking at me.  I calmed my mind and started to pray so hard.  Just as I finished my silent prayer, the surgeon said, "ok we're done, I'm closing up".  God is listening.

Her dialysis cath works well and she started on dialysis and she has been doing well so far.  She does have a bacterial infection in her blood and lots of antibiotics so hopefully her strong little will and fighting spirit will bring her around again.

Timmy and I said goodbye, I am going to miss him.  We had a nice visit. During this time, it is going to be a little challenging, but things have a way of working out.  Tonight, Chloe was on a pretend phone.  I asked her who she was talking to and she said, "Grandma Etelca".  I asked her what her grandma said and she replied that her grandma said, "I'll be there in a minute".  Maybe she will be visiting soon?

Trying to muster a smile with the weight of the situation, but achieved goofy

In transport on the way to OR

Just returning with Anesthesiologist at her side

Her mobile ventilator


  1. I have been following Elle through Bella and I just wanted to let you guys know you have been added to my prayer list. I talk with our father off and on through the day and always at night before I go to bed. These EB kids going through the hell of BMT make me sad and realize that no matter how tough life can be there is always someone struggling with a mountain. I am praying your little Elle will hurdle that mountain and hopefully not have as many struggles.
    Come on Elle you can do it!

  2. Our family is praying for your sweet daughter...

  3. Sorry Elle is having a rough time right now... always remember to find at least one positive thing for the day when bad days like this come along. Even though she had go back to the OR for a new line, the good thing is that she has a well working line right now - one that will be able to handle the dialysis with no problems!

  4. Praying for your sweet little Ellle

  5. Extra prayers for precious Elle and for the whole family. Hang in there. The EB prayer warriors are out here in full force. Keep the
    Faith. Love and Peace. Leah's Nana

  6. I was at the hospital last night and overheard two of the nurses talking about "she's starting on Prisma...." and I guessed they were talking about Elle. Trips to the ER area always scary but getting a good working line is the best! Just think how much our tiny little girls are teaching these already smart docs! Hang in there. You know we're just a couple of doors down if you need anything.

  7. I'm praying for your sweet baby Elle, she is so precious. I'm also praying for you guys, these must be rough days, but praying God gives you peace and strength for whatever you face today.

    Praying from Waterford, MI
    Kim M

  8. I am here praying hard for a quick recovery for sweet baby Elle.. Come on baby girl fight this stupid EB ...you can do this. GOD PLEASE PLEASE PLEASE . You can do this !
    Daylons auntie Kristyn from CA. We love you xoxoxoxoxoxoxoxooxoxoxoxoxooxoxoxoxoxoxoxoxo

  9. Sounds like a rough day but I am so glad all went well. We are thinking and praying for your wonderful family.

  10. God IS listening.

    Elle- Keep fighting baby girl. With everything you have and all that you are! There is such a bright future waiting for you. Wrapping you in my love...can you feel it? xoxoxo

    Denise, WI

  11. God hears every word you breathe... spoken and unspoken. Loving you guys from way out here!

  12. I'm sorry to hear that the effects of the awful chemo are starting to set in. I know that this is such a hard time. I don't know what to say, really. I don't think anyone really does. If it brings you any comfort, we were in that very room, not that long ago at all, begging God to spare our little boy. We sat for hundreds of hours in that room, waiting and praying, and things did work out. It's a hard road, but it's worth it. The emotional roller coaster seems to do more downs than ups and this point, but things will turn around. We're praying for you all. Love, Jennifer

  13. I am a friend of Bella's and her family and wanted to let you know we are also thinking and praying for Elle!

    Stay strong!
    Tina in NJ

  14. Praying for Baby Elle!!

    Team Elle
    Becky (Texas)


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