Post BMT +33
Day 96
Post BMT +33
Tate is back on precautions again meaning everyone must gown up, she’s not allowing to leave her room and I can’t do laundry. She’ll remain on precautions until her GI system decides to cooperate. Mostly an annoyance as it put the kabosh on PT bike riding and OT cookie baking and all other out of the room activities. Praying it’s short lived!
Pain pump wean started today! Tate wasn’t feeling great today so slept most of it. Not a bad coping mechanism. 9 more successful weaning days and she should be free of it. We cannot wait! She’s been attached to it since July. We are just trading the pump meds for patches and oral/iv meds, so the journey is really just starting. But…being rid of the pump means we go home without hospice to manage pain. As much as we our sweet hospice nurse Kathy, and will miss her, the period of time we spent at home on hospice prior to transplant comes with a lot of situational emotional trauma that we don’t want to have to bring into our home again. We are desperate to leave the ‘hospital’ in the hospital. I actually bought a new couch because I needed a different visual when we walk through our front door permanently this time. I couldn’t bear to picture Tate lying for months, on the one we had, just praying we could get to transplant for her to have a chance at a healthy future.
And…by God’s grace not only did she get there but is getting through it! Seriously thankful for every minute!