Search

January 29, 2019

Vitals are pretty good today!  Heart rate staying around 140.  ETCO2: high 50s/low 60s.  BP: 119/71!  These are such huge improvements from a week ago. They are being medically managed, so we don't really know what that means as far as her health... but it's still nice to see.


And in more news that I'm (unsuccessfully) trying not to read into, she's given out 3 nibbles today.  She bit on the suction tube, then the nurses finger, then Reed's finger - 3 separate times throughout the day.  This is definitely a new movement for her, as the last several days she's been doing absolutely nothing.  Not sure what this means in regard to cancer progression, but we are very happy with SOMETHING!


They did start stepping down the Morphine today.  She's been on a very low dose, but it can get lower.  Tomorrow the plan is to drop back on the sedation a bit.  And then they will alternate dropping each one every other day and just see what happens.  Still no one believes she's in any pain, so they'd like to see if they can get any sort of reaction out of her.  


I was at home yesterday, with plans on going back down this afternoon, but it snowed and the road into Philly is a nightmare in the best of weather.  She has a beautiful new blanket and furry friend waiting to be delivered =) I also wanted to talk to the nurse and find out why PT hasn't started yet.  Reed said they haven't come in either yesterday or today, and they were supposed to.  So I'll get to the bottom of that tomorrow.  But they're still doing the braces and better leg positioning in the interest of hopefully walking again someday (as opposed to only focusing on comfort).


So that's really it today.  She's still here.  She's still holding on.  We really wish we knew what was going on inside her brain... They usually give chemo a few weeks to work, so another scan isn't on the schedule in the immediate future.  For now, we just watch and wait and hope she hangs in there <3 


And she got a very special delivery today!  I will include the pic with her spa day glamour shot =) 




0 views
follow me
  • Facebook Social Icon

© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!