After some good playing and picnicing on the 6th floor:
We finally made it up to the 9th floor late last Friday night after making many visits upstairs to see our favorite nurses. Since the clinical trial would reimburse for hotel stays we decided to have a few nights in Boston with Sadie. We each stayed with her for a night and she loved being at the hotel and being so close to get back over to see Seth.
Saturday night we even got out for a date night thanks to my company for giving us tickets to the Red Sox game. It was nice to get out for a little while even though they didn't win.
On Tuesday, Seth moved into a nice corner room on the 9th floor since we would be here for a while. Sadie and I were at home for her preschool get together and we were planning to come back on Thursday. Wednesday night Seth's breathing really seemed labored, his nose was flaring, his heart rate was elevated and his oxygen levels were dropping. Sadie, my mom and I headed into the hospital to be with Seth and Steve. We talked with the doctor and Seth would begin a PCA of morphine to help keep him comfortable. It took a number of adjustments before we found a place he seemed to be able to rest.
His belly is very distended and we don't know exactly what is causing it but it could be he's holding on to fluid, the tumor in his abdomen is growing as well as the tumors in his lungs. We decided to stop the clinical trial because we don't believe it's going to give us the extra time we were hoping for and the volume in his stomach could be adding to his discomfort. Now we are focused on keeping Seth as comfortable as possible and spending as much time together as a family while we can.
Having the discussion with Sadie about how brother has been coming to the hospital to try and fix his boo boo but the medicine isn't working was heart breaking. Knowing how much she loves her brother and how we will have to have this conversation over and over again because she's so young and doesn't fully understand is hard as well.
For now we're enjoying a lot of family time at the hospital which includes family sleep overs, lots of playroom time, meals at Bertucci's (the dough restaurant) and visits from friends and family.
We don't know how much time we have left with Seth but we are trying to make the most of it ...