Elizabeth Cady

Elizabeth Cady
Our Darling Girl

Friday, September 24, 2010

Day +2 September 24

After early AM blogging, Elle started to have a little more difficulty.  She had some bleeding in her mouth which is expected from mucositis and low platelets.  But then at 5AM we had trouble getting her O2 Sats up again and the resident conferred with the ICU on-call MD and thought best to contact anesthesia.  Everything moved quickly from there and by 730 she was on her way to the OR to be intubated in a semi-controlled manner.  We did not know the Anesthesiologist, the Attending, the respiratory therapist, or the AM nurse.  The anesthesiologist seemed to know what he he was doing, but had not intubatied a Junctional. Talk about nerve racking -a semi emergent intubation with no one we had total confidence in. 

I called Daylon's mom, crying at 645 AM to ask her for some OR and tube-securing tips since her baby is Junctional like Elle.  She was helpful as was Bella's dad.

Elle did well, no real complications from the ET tube placement.  Everyone involved did a great job and we even got the OR team to allow BMT/ICU RN in the OR with her to make sure she was handled correctly. She is in the PICU now and will likely stay on the ventilator and in ICU for at least 18 more days (day +20).  Right now, she has a lot of bleeding in her mouth and all the way down.  A little in her G-tube, and also from the ET tube placement -there is always some trauma  from this and especially with a JEB kid post myeloablative chemo! 

The good news is that she is resting, not moving and struggling, her body wounds are not getting trauma, and she will not remember any of it because the Versed (a sedative that erases memory).  This portion of transplant (day 3 through 20 ish) is really hard; kids feel sick, have pain, nausea.  So she will sleep through this part and hopefully be taken off of the vent as she is starting to improve.  Also in the ICU, she will have a very competent nurse looking after her 1 on 1 and a respiratory therapist that will be frequently checking her airway and vent.

She seems very peaceful right now, I read her two baby bedtime stories and lullabies are playing in the background. 

Warning:  Photo below is our baby with her tube, may look a little scary for those Softies reading.

Resting quietly after having endotracheal tube placed
Her vent readings stable
Her vital signs stable as well


  1. Hi Becky and Steve,

    First, I just want to say 'thank you' for your blog and photos that you share for your friends and family to see, and probably people that you may not even know. I was so touched by the ceremony that you described on day "0" when Elle got her cells. What a beautiful thing to celebrate life--not only Elle's life, but also the donor's selfless giving to Elle. I am sure you know that there are many friends here to support you through the ups and downs each day of this BMT journey. I wish the BMT road was easier. You and Elle are in my thoughts and fervent daily prayers.

    Hugs to all of you,
    Lisa T.

  2. Hi Becky: After following all the other EB BMT's, I was not shocked to read this update. I really think this is the best for your precious daughter. She will be able to rest and not be in any pain. She will not remember this at all.
    Thanks for the updates. Elle is always in my prayers. Boy oh boy, how I HATE this EB.
    Love and Peace. Love Leah's Nana

  3. I am so glad Elle is resting quietly now. She needs rest to heal, and now she will get it.

    Thinking of you and praying for you!

  4. I am sorry that had to happen the way that it did. That it had to be scary instead of controlled/planned.

    Still praying...
    Denise WI

  5. Elle-Precious baby girl...sleep baby sleep, rest and get strong! Miss you and love you!
    Steve and Becky,
    stay strong you are so brave and the family is so proud of you for the strength you show each day. We are there with you everyday in spirit and our prayers for you, Elle, all of the doctors and nurses and staff who assist her,go out daily. Keep up the fight and remember us back home will be there for you every step of the way.
    Chloe- Auntie misses your wonderful big bear hugs! I cant wait to sing that rubber ducky song with you soon!
    Missing you in California...

  6. Dearest Elle -

    After following the other EB BMT kiddos, I am not surprised at what has gone on in the last 24 hrs. I continue to pray to our Father that he surround you and your precious family with His love and that you are protected from all evil. I also pray for your strength and endurence throughout this journey. My prayers are for you hourly during my day.

    Love to you and your family -


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