I get in a bit late due to traffic. He is already having ROM. During this time I wrap his hands and feet in warm washcloths, then wash them and apply lotion. He gets fed with meds at 8:30. I wait till he is done and start to get him dressed. We are supposed to have 45 minutes to get ready, but then OT comes in at 9:15. She tells us the schedule was changed and she is in there for 90 minutes instead of a 45 minute block at 9:45. During the time she works with his arms and hands I am continuing to get him dressed. The OT helps me with his pants and a fresh shirt, we wash his face  then brush his teeth. He then has about 15 minutes before PT.

PT is once again working on balance and the muscle knots in his shoulders. The PT says they are getting softer, but the ultrasound is painful and causes him to moan complaints. We talk about the chest expansion exercises and agree it has been long enough since surgery to restart those.

He is exhausted and stays in the chair for another 45 minutes, then returns to bed to have his feeding and meds. He rests for awhile, I read some but the light is so poor I give up. I order a book light from Amazon. I ask everyone who I run into if they have seen the hair wash station. Everyone is looking now.

By 5:30 he is woken up for more meds and at 6 Loni comes to hang out with her boyfriend Brian. I leave them alone , go out to the waiting room, but it is packed. I wander the hall and call my mom. I talk to my husband then read under the light of the hallway after finding an abandoned office chair in a storage area. They leave after a couple hours as at 8 pm he gets more feeding and we start the evening routine.  He has his vitals checked and he has a slight fever.  Fuck.

By 8:30 we begin to think we he won’t get fed when his nurse pops in apologizing for the delay. He is surprised we have not gotten the suppository and I tell him we usually wait till after feeding. I let him know there is no hurry and it’s ok if we are a bit later tonight.

Colin is fed by 9:15 and I start the BM program at 9:45. I let his nurse know he won’t be ready for his 10 pm meds at 10 and we shoot for 10:30. Colin begins coughing. He asks to be suctioned and I get very little. He coughs more. I suction again, get a little. I leave him flat and he cough for 45 more minutes, exhausting himself but moving stuff out. He also has a 15 lb BM, I swear. If he had been a baby, I would have been afraid for his health. This was just a big BM at the worst time. It meant much more cleaning and moving, which caused more coughing. His arms are starting to feel pain where he hadn’t before. His feet are also hypersensitive and his legs are  in constant spasms. He is more aware of the catheter and when we use the suppository. Poor guy feels like shit all over. He continues to cough and fell crappy, finally asking for morphine along with his other nigh meds at 11:30.  I suction him once more before I leave, getting a fair amount, but nothing thick and/or green. He starts to relax. I set the TV timer, put the nurse call button where he can reach it and kiss him good night. I leave by midnight, too late to drive home, so I stay at my in laws, missing my husband.