All I Want for Christmas

Jenny here.

Today I was so happy to have a social worker. We met with the BMT social worker so she could hear our side of the SNF snafoo. I was almost brought to tears. As I started to air my issues ( that facility did not try to involve me and gave no second chance (among a few others), Wil woke up and asked help in sitting up. Sitting up is no small feat these days. He pulled and pushed and sat on the edge of the bed. He said "I want to be heard. It's just not right."  And so he told his story. I just could not have been more proud of him. In the last 24 hours we are seeing better spirits. I think he's finally found that positive fight again.

The team, and especially his oncologist, were livid about what happened with the SNF that was sort of like a MVP placement facility for patients. I was told they are making some calls and the facility is now scrambling to extend us an olive branch of re assessing Wil again. Um, no thanks.  I was told they had called UT 10 min after he left saying he couldn't come back. Wil admits his wrong. But these are the types of patients facilities should be trained to take care of. He hasn't ever had a problem with any staff at UTSW. In fact, not even needed a sedative since he got back. I will just never forget looking into ER room #4 on Saturday, after driving like hell from the SNF to UT, seeing him sitting on the edge of a gurney, draped in part of his gown, looking at the floor with tears in his eyes. He had no way to contact me because the SNF had kept his phone. He was all alone for several hours because the SNF had never called me. I'm glad he had a social worker today too to tell his story to...I think he felt better saying it out loud too.

New plan:  Here's where we need some prayers, vibes, chants, and wishes said aloud--the UT rehab floor is coming back to re eval him TODAY. Funny, he was too strong last time to qualify. Now he may not be strong enough because it's 3 hours of PT every day. It's a 14 day program. He has to be well enough to tolerate it. BUT it would be such a great fit. And his BMT team could set eyes on him daily as well.  His whole team and me would love that to happen. Cross your fingers!

If that doesn't work we are looking at 3 news rehab facilities. He will be at UT overnight at least. We should know more by end of day.

His vitals are awesome.

On FB I had saw several people post wishes for Christmas. I kept thinking, no more cancer or for Wil to smile or to win the lottery or to have him home. But I realize that I keep getting everything I really want and need each day, somehow, so we're blessed.*

I try to not put too many embarrassing things on here. But cancer is too serious not to enjoy the silly when it happens. So...he may delete this later but for the time being, here goes:  He started saying tons of "love yous" and slept ok without me last night. What a gift. This morning he whispered in my ear "shart". Followed by my questioning look and him, with a more serious look, saying "shit. fart" and a pointing finger toward the nurse button for cleanup on aisle 3. My man, a normally very quiet, easily embarrassed guy....loss of independence is hard, but he still makes me laugh.  I'm glad he's in better spirits.

*But if Santa wanted to throw in something extra I'd take Wil being able to stay "home" at UTSW for the holidays and his rehab.