I wrote a post yesterday and then Blogger ate my homework. Grr.
Here's the short version of the story:
GH came home on Friday. Yay!
He has hepatorenal syndrome. Boo.
I'm on leave from work. Yay!
The reason I'm on leave sucks. Boo.
My mom is here. Yay!
My in-laws are here. Boo.
My in-laws are leaving tomorrow. Yay!
They will be back soon. Boo.
Hospice will be managing the procurement and delivery of all of GH's medications, thus freeing us from the incompetent morons at our local pharmacy. Yay!
GH is on hospice care. Boo.
Overall, GH is doing OK. He's very tired and his abdomen and legs are filled with fluid, making it hard for him to walk around and hard for him to eat. He spends most of the day in bed, and so far has not really had the energy to do some of the things he hopes to do (write some letters, record some stories for the babies). He's going to try to start on some of that today. Emotionally, he's hanging in, although I think he feels very conflicted by wanting his parents around because they are his parents and yet finding dealing with his parents exhausting.
I'm also doing OK. I think it's a combination of the surreality of it all and just dealing with the things I have to as they come rather than thinking about the ultimate outcome. I have social workers coming out my ears: a hospice social worker, an Early Intervention social worker, and an oncology social worker through GH's oncologist's office. Hopefully they can help me figure out how to manage GH's parents and the flood of friends that want to come visit. People want to help and people want to see GH, but I'm very protective of our time together and I don't want him to spend all of his energy on friends and not have any for me. I'm so selfish!
GH's parents are leaving tomorrow. My mom and I are going to go run errands this afternoon and give GH and his parents some time together alone before they go. Then he's mine, all mine! I'm hoping that we can watch 24 together tonight. We missed it last week because of GH's hospital admission, but my mom taped it for us and we watched that episode last night. That show is getting out of control, but I can't stop watching.
I'd thought that when we got to this point, I'd want to take a big trip with GH, or at least get away for a few days alone. I find, though, that now that we're here, I don't care about that at all. Any time together is fine with me. I don't care where we are. Even our alone time in the hospital was wonderful, in its own strange and tragic way.
I also find that I'm obsessed with getting GH to do things for the babies. I really, really want him to write the babies letters and for him to record stories on tape for them. It's hard for me to keep the perspective that while that is important to me, it's up to GH to determine what's most important to him and how he wants to spend his time. I've told him that's important to me, and I know it's important to him, too, but we'll see how he prioritizes things.
We should be getting a visit from our regular hospice nurse today. The weekend on-duty person came by on Saturday. He was very helpful. I hate that hospice is a part of our life, but I hope that the hospice folks will be able to help us find our way down this road.
Next up in posting: more gallows humor. Neither my father-in-law nor my breast pump are involved.