I should let you know where we are in our journey. Tuesday night around 11:00, Isaac started to feel something wrong in his chest. He thought it was a collapsed lung or more fluid. So, his mom came over and took him to the ER, so I could stay home and get some sleep (ha) so I could go to work the next day. It turned out to be nothing, well sort of nothing, it just turned out to be his lungs getting worse...so he came home around 4:30am.
During the time he was at the hospital, I spent a lot of time sobbing. Then I made the decision that it was time to look into hospice care. I knew I couldn't do it all alone, even with the family and friends we have helping us. With hospice on board, we could call them at 11pm rather than having to go to the ER. So, last night we met with the hospice agency to set things up. They were so awesome. We'll have a nurse coming 2x per week to do his blood draws so he doesn't have to travel to the clinic. We'll also have a home health aid coming 3x per week to help with daily tasks like bathing and such.
I feel SO much better now that we have that in place. Our next step is to decide on a funeral home to use. Ugh. The hospice part I didn't mind as much, but the funeral home...that's so final. That's the end. I'm not as anxious to get that in place, but I know it's necessary.