Questions, concerns, frustrations...

As I look back on the last week, I question how we ended up so swiftly where we are now.  I know Ed was tired and struggling last week, but he was working to get up and walk and sit in the chair.  And he was eating solid food.  I look back and see that it was only Tuesday morning that we were so excited that he walked into the hallway.  And then we made the swift move to Elaine and there were anxieties and frustrations and then the blockage and off to the ER.  Would the blockage still have happened if we just stayed put for another day as originally planned?  I don't know...probably, but I know I have an open question about that.  I know regardless it was not going to change Ed's prognosis, but here we are with Ed not even able to get out of bed, with an NG tube and only eating clear liquids.  I know I will forever question whether if I had put my foot down and said we were not moving to Elaine until Wednesday as originally planned whether it would make any difference in terms of where we are today.

Yesterday morning Dan and I did go visit Fisher House and they took our information and will check on insurance coverage.  We know the insurance will cover the hospice care, but it most likely will not cover the room/board which runs about $350/day.  Ed if very concerned about not doing something that will hurt us financially.  Our ideal would be for Ed to receive hospice at home; however, with what he needs due to the ascites and not being mobile, he needs more nursing care than I can give him.  Any additional nursing care we would need to pay for, so again, there's that out-of-pocket expense that Ed does not want.  We are also seeing if going back to Elaine is an option.  Ed would want a private room and we could receive hospice there.  Another option we discussed with our case manager was the possibility of staying in the hospital and receiving hospice care there.  Again, if Ed can't be home, then he wants the option that is least expensive for us.

Of course our frustrations ran high yesterday as well.  Soon after Dan and I arrived, a nurse bops in and annouces that Ed may be discharged today (she's so happy!).  Needless to say, we were all very perplexed since we haven't settled on where he was going.  Thankfully I had just left Fisher House where I knew they were not able to check insurance until Monday.  So this time, I clearly said "I don't think so".  Needless to say, this got Ed all worked up--here he goes again, feeling shipped off somewhere.  Thankfully our case manager was on the floor and she came in to talk to us.  With Ed's permission, my mother and I went outside the room to talk to her.

Chris (our case manager) shared where she thought we stood and what she understood our priorities and options were and the good news is that she was aligned with us.  She was clear that no bed was secured anywhere and there was more follow-up still needed and for someone to come in and tell Ed he was being discharged was not right.  We definitely where aligned in terms of what needed to be done next and she also came up with the additional option to pursue of Ed remaining at Cooley and receiving hospice care here.  I communicated to her and to Ed's doctor my unhappiness with the fact that "they" were causing this additional angst for Ed.  He doesn't need this.

There were other things throughout the day such as miscommunication about a PCA pump.  On Friday, we agreed with the doctor that we would try this.  On Saturday when I was there, the nurses were saying Ed "decided he didn't want it" which was totally untrue.  Of course, while talking to Ed's doctor (Dr. McCracken), she experienced this miscommunication first hand when the nurses came in and were contradicting when she just told us.  And it happened again later in the day regarding draining his abdomen.  When Ed was sleeping the nurse talked to me and thought Ed was confused about the situation and I explained to her that they were confusing all of us, including me!

I am just thankful that I am there and can be there to keep track of all this.  I just can't imagine if Ed was alone and had to advocate for himself in his condition.  And I know we have lots of cooks in the kitchen--Dr. Z, Dr. Bowers, Dr. McCracken, and our case manager and then many nurses.  Also, since Ed is in a "regular" unit now, the nurses change shifts every 8 hours (versus 12 hours as they did in critical care) so there is less continuity as well.

So I'm hoping today settles down a bit.  We'll see.