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