Tuesday Aug 8, 8:00 PM update: Throughout this afternoon Madi has required less IV meds, in fact her last shot was available for her at 3:10 but she waved it off... not needed yet, her pain level is manageable. The other time-released meds seem to be kicking in, and the goal of course is to -not- need IV meds, and tweak the pain patch and pill form meds accordingly. The pain management specialist came in this evening, very pleased. Madison was sitting in a chair with her feet up on the bed albeit briefly.... having just returned from a very short walk.
They can't prescribe IV pain meds for take-home use: required, trained nurses with all of the electronic monitors and resuscitation equipment in case of any respiratory challenges. Assuming we get her home this week, she may or may not come home with an oxygen tank.
Up until yesterday they didn't want her out of bed and things seemed to deteriorate since her arrival Friday. She's still on IV antibiotics for the pneumonia, her can heart rev like a sewing machine at times, oxygen level a tad low... which may be her new normal. What a huge difference a half a day makes!!
Next steps are to be IV free, try and get her home this week, then fatten her up like a Thanksgiving turkey, ideally to be physically prepared to continue with the current treatment roadmap, while exploring all options her expert chordoma team may consider.
Love,
The Jones Family
They can't prescribe IV pain meds for take-home use: required, trained nurses with all of the electronic monitors and resuscitation equipment in case of any respiratory challenges. Assuming we get her home this week, she may or may not come home with an oxygen tank.
Up until yesterday they didn't want her out of bed and things seemed to deteriorate since her arrival Friday. She's still on IV antibiotics for the pneumonia, her can heart rev like a sewing machine at times, oxygen level a tad low... which may be her new normal. What a huge difference a half a day makes!!
Next steps are to be IV free, try and get her home this week, then fatten her up like a Thanksgiving turkey, ideally to be physically prepared to continue with the current treatment roadmap, while exploring all options her expert chordoma team may consider.
Love,
The Jones Family
