Hey everyone. My husband has had a setback and I'm just posting as an update since I considered most of you friends. On October 30, he became resistant to having his head elevated at night. That night, he insisted he keep his head flat and the swelling, by morning, had caused nausea and vomiting, which prevented his pills from staying down. By afternoon, no other meds were able to be taken either. By nightfall, he had to be admitted to the hospital. They upped his steroids substantially, and then wanted to discharge him, but luckily kept him one more night. During that night, urged by the steroids, he wanted to break out of the hospital (who can blame him) and caused the hospital staff stress. I was shocked because they intended to let him discharge himself because they are ordered not to "chemically restrain" anyone. This was at 3:30 a.m. on November 1. He'd have frozen to death outside here. A quick call to hospice straightened things out, but then he had to be transferred to a critical care hospice facility.
This place is wonderful. They know what they are doing. It's calm, peaceful, and able to handle visitors with ease. He's been here since, with repeated attempts to discharge him, but matching those efforts with newfound instabilities that allow him to stay. They tell me he is likely to die within a few days now. I will say, he is thus far in peace, not in pain. For that, I am grateful. This is a hard journey for all you warriors out there. I commend each of you for your bravery and strength. You'll need ample amounts of both to fight effectively.
I'll try to update this as things change, but I don't want to miss the opportunity to thank each and every one of you who has helped us on this journey. This board has been my favorite resource, as this disease is so rare that finding others near me would have been impossible.
Hugs from here.