September15/16: best of times/worst of times. As you already know, I love my birthday and try to squeeze as much enjoyment out of it as I can. My wedding anniversary, which falls the following day (I’ve never liked that) is kind of hard—well, the last two. It’s not a fun day to celebrate anymore. Of course I filled it up with other things, but the thoughts still lingered. I took the day off and didn’t even drive to say hello. And there was no guilt.
Today, however, I was ready for company, and I got a great reaction when he saw me coming. “HAPPY ANNIVERSARY, DARLING!” I greeted him. The nearby aid thought it very romantic and took our picture.
I had a Care Plan Meeting today with some of the administrators. They wanted to discuss the issue with his swallowing. They still find it too big a risk for me to be feeding him any liquids or food. It came up that it might be possible for me to sign a waiver and feed him on my own, but they weren’t making promises. I told them I’d like to look into it more, look more closely at the risks of aspiration. It’s hard as I think cognitively it would help him greatly, but I’m not a doctor and have to respect the suggestions I receive from those who are.
They also told me that because of his feeding tube, he still benefits by requiring skilled nursing care, according to the MediCal system. But they consider him a long-term patient, unlikely to live at home again, unless I push for it. I don’t know what to say. I’ve been seeing a lot of hope lately, I guess I’m back to believing in his healing more than the staff is. It’s the way I choose to look at him. It’s better for him that I do.
One good thing that came out of the meeting though is that I asked if we could plan for him to come home for Christmas day. And they said, “Yes of course!” So I need to figure out wheelchair transportation, etc. But it got me so excited to be allowed to have that plan for him. They thought he might even be able to sit in the back of a car with a seatbelt as long as we transferred him properly.
Ok then, I was given the news that he might never live with us again (from the mouths of the medical pros) and then the news that even now, I can take him outside, if I just organize it properly. In order to get him ready for travel, they will need to start working more closely on his standing/sitting transition skills, which is great. Anything we can get is helpful now.
I’m taking off on a little road trip to get way for a couple of days. Thanks, mom and dad, for taking the kids.