We’re starting to see more and more of her smiles and personality each day!

She’s having the best time playing on the floor with all of her toys.

Dancing to her songs, playing her xylophone, and walking around her discovery table.

She’s been eating a little here and there and just doing what she can to get home!

Yes, her face is still swollen.

There’s some discrepancy amongst her NPs, and us, on how to handle her nutrition.

We know that she can’t go home on TPN (IV nutrition) but she CAN go home on the NG Tube.

With her fluid retention, we’d like to see the TON stopped since they’re still going up on her NG feedings.

Not to mention, she’s doing better each day with oral feedings. To us, it’s seems redundant to have three different means of nutrition, especially when she’s still retaining fluids.

Fluids around her lungs are what ended us in the ICU last week.

We’d like to avoid another return visit.

Oh, one more bit of good news: her mucus seems to be lessening!

She wakes up in the morning with a bit of mucus but doesn’t battle it all day.

So that’s really great news!!

We’re doing what we can to help get her home by Christmas! We just need her care team to agree on how to get her off the TPN!


She woke up with her nose cannula off her face (and O2 stat levels fine), so they just took it off.


Night NP has changed her TPN to 16 hrs (from 24), ordered an additional Lasix, and is giving Avery appetite stimulants. She doesn’t understand why none of these changes were made today.

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