more again

Amy was hospitalized for 8 days. Had surgery on right kidney tube and she’s still recovering.

A fistula was discovered and we are waiting for a surgeon to return from holiday. He does robotic surgery and might be able to fix the leak.
Her back pain has been very uncomfortable and worrisome.
The nurse has been coming every day to flush her tubes. The antibiotics are over and now we wait to see if she’ll get another infection. I can’t help but feel there is something else going on. What, I don’t know but there are just too many unknowns. Swollen lymph nodes, leaking, infections and what about long term? What can we expect?

I think we’re both burnt out. It was our anniversary on Sunday but not joyful. We’re trying to adapt to the new normal but we also realize how limited our life is.
Amy came home from hospital and talked about hospice and assisted suicide. Tough conversations. She is no where near those options but it’s constantly on my mind.

I have no one to share those fears with. I have no support. No one gets it. It’s a very lonely time.