bmt day +17 sleeping with xylophone stick
  • WBC: 2.7
  • Hgb: 10.2
  • Platelets: 16
  • ANC: 1300

We haven’t seen her ANC over 1000 since May! This is great!

We also haven’t seen her this grumpy since her CRS + neurotoxicity stage after CAR-T.

She doesn’t want to be touched, messed with, or even looked at sometimes. (Also why she’s still in her Halloween shirt that she slept in)

She’s been pushing us away and throwing dirty looks all day.

It’s understandable. We’d be in a bad mood too after everything she’s endured.

Plus, some of her meds can cause this types of side effects.

bmt day +17

Her doctors thought about upping her pain meds today, but instead the pain management team decided she may just be agitated rather than in a lot of pain.

So, we’re going to try Valium and see how that works for her.

Even as a baby we can see some anxiety in her based on her reactions to certain events, so we hope this helps.

Otherwise, she received platelets overnight.

She also ran a low-grade fever overnight into this afternoon. Tylenol is keeping at at bay. (Could easily be due to engraftment).

bmt day +17 letting ma hold her

She’ll receive IVIG today to help give her immune system a boost.

They upped her fluid drains to 100mL (up from 75 yesterday).

She’s still on blow-by oxygen and sleeping often.

Finally, her face is healing. Slowly. It’s most peeling today and the sores are healing.

Plus, the clot in her nose finally broke loose this morning.

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

Hoping everything starts leveling out and closer to normal for our sweet girl soon.

Sassy Avi in her FreeBirdees Halloween print

We sure miss her happy disposition.

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