"One Step Forward Two Steps Back"

That's how Ed saw today...although I corrected him that it was more like 1 step forward, 1/2 step back.

Today started as a good day.  Ed worked to get out of bed twice again today.  This morning he lifted himself to a sitting position, stood, and then walked further than he has before--across the red tape on the floor and towards the door.  This was a major accomplishment!  We were so excited to see him lifting his body and walking this distance.  He spent a couple hours in the chair and had his lunch there.

While sitting in the chair, his colostomy filled pretty quickly with fluid--it was abdominal fluid leaking from around the stoma.  Earlier in the week, this was leaking from his incision and the stoma area.  Thankfully there didn't appear to be any leakage from the incision today.  We hope that means there has been enough healing in that area so it doesn't happen.  They then got Ed back to bed to drain fluid to relieve the pressure.  Total for today was 4 liters.

Just before dinner, Ed decided to try to get back up, walk a bit, and get into the chair for dinner.  He did a great job getting himself into a sitting position.  Unfortunately, when he got up his blood pressure plummeted.  He did make it to the chair, but it took a good 45 mins for him to feel better.  They administered Albumin and a bag of saline to help replenish fluids he lost.  This was a very down time and Ed was very discouraged.  He also lost his appetite and didn't feel like eating.  But, even though discouraged, he forced himself to eat some of his dinner since he knew how important that was.

A couple hours later he returned to bed and they drained his colostomy bag which was beginning to fill with fluid again.

This just sucks...no other word for it.  When his blood pressure plummeted and he felt awful for about an hour, it was a low point for him...very discouraging after a good morning.  And we're concerned that the fluid is still accumulating quite a bit such that it begins to leak from his stoma area.

Ed and I will have a meeting tomorrow with a doctor from the palliative care team.  Matt, the ICU nurse practioner, talked to me about this today and I asked him to set this up.  I mentioned it to Ed and I think he understood it at some level.  This is a difficult step to take and just reinforces the inevitable.  But I'll keep my chin up and we'll learn more tomorrow.  As I understand it, this support will be critical as we continue our journey.

At this point, they're saying three more days in the hospital and then hopefully to the rehab facility.  An infectious disease specialist is supposed to be consulted.  Plus we need to consider the volume of fluid he is producing.  Elaine of Hadley does have a hold on a bed for Ed.  Let's hope they'll hold it a few more days.

I'm trying hard to keep my spirits up the best I can for Ed.  But the sudden unexpected down points are reasons I spend my day next to his side.  We're trying to find a balance and I'll try to continue to work some hours each day.  Ed is hoping once he's at Elaine, that will be more convenient for me and we can work out a better schedule.  Right now, though, that is hard to plan for and Ed is my first priority.  But leave it to Ed to worry about what is most convenient and best for me.

We have agreed that our ultimate goal is for him to be home.  We cannot predict when that would be and what his condition will be when he returns home, but there is no disagreement that this is what we want.

First step though is getting to rehab.  I just hope we can slow down the amount of fluid that is accumulating.  We can fully handle a liter a day, but 4 liters and leaking from his stoma area is of concern.

And the beat goes on...  Please keep praying for improvements...