BMT DAY +21

Although still hard to see, her face is healing!

Slowly but surely.

  • WBC: 5.9
  • Hgb: 11.5
  • Platelets: 40
  • ANC: 2600

We were also able to spray some saline in her nose to start breaking up the clot in there. Getting that clot out will help her breathe a little easier; especially when she sleeps.

Speaking of sleep, remember yesterday when we talked about taking her off the sedative?

Well, if you’ve watched her Instagram stories, you’ll see we stopped them and she almost immediately woke up.

She sat up right away, grabbed her stick, and watched her songs.

She also didn’t want to stay in bed, so Papa and I took turns holding her. (Mom & Dad spent the night with Big Sis to reset a little).

But, not only did she just wake up, she stayed awake from about 5:30pm until 3AM!

No naps. She was just awake for TEN hours!

She didn’t seem to be in pain or agitated. She just wanted to sit up and watch her songs.

We tried EVERYTHING to get her to sleep. She was tired but refusing to sleep.

So, in a compromise with the care team, we put her back on an incredibly low dose of the sedative with the promise we’d stop it first thing in the morning.

She slept until 10:15am and then woke up, on her own, before we could stop the sedative.

She was a bit more groggy after everything we tried the night before, but still awake and wanting to “play” the best she could.

She even had Music Therapy and shook her maraca a bit.

When Mom got there Avery was so excited to see her that she gave her plenty of cuddles.

So, it’s a slow and steady process, but we’re getting there.

Avery is showing us all who’s boss.

Our biggest requests now are for her to have more output so her liver and lungs can rest. The VOD is improving, just taking a bit.

The fluid off her stomach would help relieve several of her lingering issues.

As always, thank you for lifting up our girl!

Similar Posts