First, from a BMT perspective, Avery is looking great!

Her last dose of Defibrotide (VOD medicine) is tomorrow.

In the last 12 hours, she has shed 300mL of fluid! This has been great for both her lungs and her liver.

Speaking of her lungs, we’ve continued to turn down her ventilator settings throughout the day.


  • went down on her pain meds
  • began weaning her TPN (IV feeds) since she’s doing well with her NG Tube
  • having some stomach cramps and gas since she hasn’t had food on her belly in weeks
  • moved oral meds to the NG Tube so they don’t have to be given through IV anymore
  • giving her a second diuretic, as well as a laxative, to help her continue to move the fluids out of her body
  • her lungs sound and look great
  • did an ECHO to check her heart
  • may try to cycle Precedex (sedative) or add Melatonin to her regimen so she can get back on a normal sleep schedule (sedatives are not keeping her asleep)

She’s been awake a lot today watching her songs and Moana.

She still has her stick in her hand.

They’ve had to fix her vent tube twice today because she’s apparently good at working it out.

In case you were wondering, Avery is stronger than we give her credit for I think.

It takes 4 people to hold her down for procedures and a couple different meds to get her still.

I’m not kidding when I say nothing is going to keep this girl down!

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