So we have a whole new plan regarding addyson and her protocol. We will not longer do a high volume flush. We will go down to 300 once a day with goltyly vs the saline and glycerin. We will get a spinal mri. We will add in a nightly medication to help with pain and movement of food. He said she has colon function! He said his hopes are too do this for about two years then try to back off and see if she can keep her colon working without daily flushes or If she would need to take another medication daily. We do need a better gi down home to manage her flushes so we need to get that ironed out. Our thought is that dr nasr identified and removed the “bad” or “dissed” part of her colon back and october! We are remaining hopeful after a very long 3 days.
This was a hard stay for addyson. New hospital. Away from family and friends. No visitors and a shared room, an interesting and very emotional patient as her room mate. Lots of codes called throughout her stay and lots of tests/procedures that were very uncomfortable. she handled it with grace and strength. she actually cried when we left the hospital. she said she’s gonna miss her team here. I told her we will be back but she was sad, even after all the pain of the last three days.
We will keep pushing forward and tracking down answers
Beaming with hope 