"It's like Thanksgiving in an 8x12 box"

Today's title and quote makes me laugh because that was Ed's comment yesterday when we had several of us coming in at once to visit him (me, Dan, my mother, my sister Marion and my sister Cathy) and a couple nurses/aides trying to get him settled in a chair.  It was a bit chaotic with us all milling around, finding chairs, getting settled and then Ed comes out with this.  It certainly made us all laugh and nice to know that he still has his sense of humor.  In fact, he was doing quite well giving his nurse Laurie a hard time (only in fun) and she was giving it right back!  It was good to see the joking and laughter.

And, yes, they did get Ed out of bed into a chair which was great to see.  He did really well without any blood pressure drop and sat in the chair for about 4 hours.  The only reason he had to go back to bed was that sitting up causes the fluid to begin to drain from his stoma area.  Since it had been several days, I was hoping that it would no longer "leak" from here, but it did and it got to the point where they had to drain the bag every 30 mins.  So it was back to bed to slow the flow and to drain his abdomen.  Total fluid from the colostomy bag and from the PleurX was about 4 liters.  Damn...I was hoping the amount would go down!

Of course, I will need to talk to the doctor today because I'm not quite sure what all this means other than he's outputting more fluid than he's taking in.  He still has the NG tube in and whether that comes out or not, we're not sure.  That is our goal, but we're taking it one day at a time.

Sunday was also quiet in terms of possible discharge and where Ed would go since most folks were not working.  I'm sure today will become crazy again, but we have been advised and will follow this advise to not feel pushed or rushed into any specific direction.

Dan did return to work/Waltham late yesterday.  As much as I know he wants to be here, he needs to keep working.  He's only been at his job for 4 months and doesn't have any accrued time.  Plus Ed also feels strongly that he do this.  But thankfully he is only a 1.5-2 hr drive away.  I do sleep much better when he's in the house though.

Thank you all for your advise and prayers and support.  I know many of you offer to help in whatever way we might need and I appreciate that.  Right now it's prayers for comfort for Ed and strength for me and my family.  I am saving up all your offers knowing that if I need to, I can collect on them in the coming days, weeks, or even months.  For although this journey right now is difficult, Ed is still with me and so there is a level of comfort and support I am getting from him.  But I know this time is limited and when his time here on earth ends, I'm sure that is when both me and my family will need you all the most and I will call upon you then if that's the case.  So although I'm not taking you up on your offers today, I know you're there and will call upon you if and when the time comes.

For now, though, it is just your thoughts and prayers that we need.