8.4.23 Another Step

After the scare we had in March with Aimee’s intestines slowing down causing extremely low ostomy output, she eventually settled onto a new plateau about 35% lower than her previous function. She had remained there until 2 weeks ago. Again her intestinal function suddenly decreased another step down, 20% less than it has been. Her pain threshold is so high and she is handling this step down quite well. At this point we’ve only added one additional dose of morphine daily and as long as we keep her meds going, she most often seems to be comfortable, even happy. She has some moments of clearness, of being present and interacting. Delightful moments. 

We are hoping for a nice long plateau again. After talking it through with the hospice nurse in our weekly meeting though, we wonder just how many more of these step downs in function she will be able to tolerate. We’ve had to talk about next steps, about difficult decisions and I anticipate more of this conversation on Monday when we meet again with the full hospice team. It is difficult to continually live with these possibilities in front of us at an undetermined distance while we also attempt to live. 

And life does continue on around her. Today Louisa was putting on make-up while sitting in Aimee’s bed. And then there is Caleb snuggling Benny on her bedroom floor. Precious every day life.