Elizabeth Cady

Elizabeth Cady
Our Darling Girl

Saturday, September 25, 2010

Day +3 September 25

Elle is holding in the ICU.  She is not struggling in pain and she is breathing easily enough on the ventilator.  She is starting to have some changes that we are watching, however.  Her sodium was high this AM at 155, and she was showing other signs of being "dry", surprisingly since we were expecting fluid overload. fluid and electrolyte balance becomes tricky.  She got a fluid bolus and she isn't peeing.  When she does, it is dark orange.  Her Bili is increased, her skin is yellow so her liver may be taking a hit.  Not sure why; could be because of the TPN (her IV nutrition) or because of the chemo (I never trusted that Busulfan!) She likely will get an ultrasound tomorrow to check her liver. 

We did her dressings earlier.  In some ways so much easier and in another, so much harder.  Being asleep and not crying or struggling made it easier both because dressings weren't being wiggled off and because she wasn't in terrible pain.  The hard thing was protecting her ETT (breathing tube) which takes a respiratory therapist to hold and guide the whole time during any movement.  So it took four of us an hour plus instead of three of us 2 hours.  Her vitals, PEEP, Sats hardly changed which told us that  she was doing fine during the process.  And she didn't bleed as I expected, although she did get platelets earlier. Her Hemoglobin was 11.4 surprisingly, so she did not need blood.  the Vecuronium used to paralyze her also makes her secretions thick so I am going to ask the Docs what they think of Dexatomadine (not sure how to spell either of these) which acts similarly without the excess secretions.  Her lungs are a little more "junky" and white on the left via chest xray but at least her venous blood gases are good.  Sorry if getting medical here.  Basically worried about liver, kidneys, and lungs a little and watching them. 

I miss her sitting up, looking, playing, smiling...  I love this baby so much.  My heart is aching through this time, and Stefan and I so appreciate everyone's support, love, and positive thoughts/prayers.  Thank you for your cards, emails, and blog comments too as they encourage and comfort us.  We read them all.

Ma and Gil have been such great helpers and Ma, being a former ICU nurse, has been a great advocate for the baby and a resource for me.  Sadly, they are leaving tomorrow, and I will miss my mother.  My brother will be visiting for a week though so we are all looking forward to that.

Ma's last night here with Chloe waving her magic wand and wearing her newly made ladybug crown


  1. We've been thinking and praying for you guys constantly. I wanted to get over to the hospital today to visit, but never got a chance. We pray that Elle's liver will not have been effect by the chemo and VOD won't touch her. If you need anything, just give us a shout. We're always around and we're always up! love, The Edlings

  2. Thanks so much for the update. We will pray for your precious daughter. It is such a shame they have to go through this to get better, but we will continue to pray for a very happy ending. Love and Peace. Love Leah's Nana

  3. Dear Stefan and Becky,
    Thanks for the update- I was reading the blogs, looking at the pictures and crying my eyes out....Glad to know your Mom and Gil were around on the "day" you needed them most...Chloe must be beyond herself seeing and being with her favorite Grandma...I am always praying for Baby Elle and hope everything goes well..take care of yourselves too and if you need anything, dont hesitate to call me... Ludi

  4. our thoughts and prayers are with you guys and hope Elle turns the corner real soon....stay strong, keep the faith and take care of each other..we are rooting for you everyday!
    john, beth, Zach, Casey and Becky Neikens

  5. Thinking of you all. I've read Bella & Daylon's blogs. When I found them they were about halfway through their journey so it is very interesting seeing how everything starts. I only have high hopes for you all and sweet baby Elle. She's absolutely beautiful! Please know you are in our thoughts and prayers each and everyday.



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