Keeping watch

Jenny here. Last night was a rather sleepless night as I sat looking over Wil as he tried to sleep, helping him calm down when needed. I know I can't do this every night and I KNOW I won't need to because this is a temporary situation for us.

First the good:  Medically Wil is doing ok. Vitals are great, blood counts good, bilirubin is still high (jaundice) but continuing to slowly get better.  He's oriented. He's watching a few episodes of Family Guy here and there and I saw a partial smile for a second. 

Continuing concerns:  Sure the guy can pass the questions about who he is and where he is, but he's still very agitated. He still randomly gets upset about why the nurse won't tell him if his plane (bed) has been used for combat already (or other interesting things like what happened to the dead bodies). These are pressing questions during Wil's witching hour (the wee hours of the morning when he presses that nurse call button repeatedly and tells them how to do their jobs lol).
Today, he's allowed me to laugh a little without getting annoyed. It's the small things.

Nutrition wise I'm still concerned about motor skills in that mouth. They were going to order a swallow study but when I got sick and he got discharged it fell on the SNF to follow through. And he was not there long enough. He just doesn't eat. So a swallow study is back on here at UTSW. When I say he maybe eats 3 bites of food...it's still true. He's now down 80lbs since Halloween. While weight loss is good for him, not like this. And not to where it's weakening you more.  His PT time made him dizzy. I think it's more of a lack of food thing today.

The SNF was not interested in trying any harder to work with him.   My baby, rehab drop out. They kept saying its a safety issue and "he's a big guy". Even agitated, I can't imagine being afraid of Wil. Maybe it's the home visitor to the mentally ill in me, but I think I've seen scarier. I think he's just not the typical and all of sudden there is no room at the inn. With all that said, his oncology team will be making new plans for him based on some assessments today. Many thanks to his sister who has hauled his possessions back and forth across town this past week!

I'm starting to feel compelled to run my mouth to anyone who will listen and who comes into contact with my sweet baby (who doesn't always act so sweet right now).  They are all nice. We've had amazing doctors, nurses, techs, therapists, cleaning crew, food service...but I feel absolutely compelled to tell bits and pieces of the story of us, of Wil...of life outside this captivity...of life B.C.  Before Cancer.  Of the real Wil. 

I've got plenty. I'd love to hear some of yours if you are willing to share!  If your comment doesn't show right away, never fear, I have to click approve :)