Monday afternoon Beth decided that she needed to get out of bed. She wanted to go outside. She INSISTED that she go outside. She has no idea how difficult that is for us, as she can't stand on her own, and can barely sit upright, but we love her and do what we can.
Now for a vent session.......
I have to work. Work provides income, and insurance. In order to work I MUST have SOME sleep.....
Beth is in a hospital bed in the front room, and I sleep on the couch next to her. We have been doing this now for nearly 4 months.
Here is the basic dialog and events from last night, about 12:00 AM to 3:00 AM..... Please also understand that it is very difficult to understand her when she talks at this point.
Also, this is just a vent because I am extremely tired right now.......
midnight: Beth- Wendell!
Me: rolling off the couch and crawling to her side: What dear?
Beth- I'm thirsty.
Note: Beth cannot drink from a glass or cup anymore, and drinking through a straw is very difficult. We got an empty (new) sauce squeeze bottle and fill it with water and use that for her to drink out of. Her balance is also WAY off, and can't keep her head upright; it always goes to her right now.
Me- OK. I get her some water, and make sure it doesn't run out of her mouth and she swallows it.
Me- is that enough?
Beth- nods yes.
Me- OK, I'm getting back into bed now.
20 minutes later....... I hear her trying to get out of bed....
Me- Sweatheart what are you doing?
Beth- I want to go home.
Me- You can go home whenever you want to..... But. I need you to stay in bed. Then I help her get her legs back onto the bed and get her comfortable. I also lift her back up towards the top of the bed because she is always scooting herself down towards the bottom of the bed, in spite of the knee section being raised up.
Me- Are you OK now?
Beth- Nods yes.
Me- OK, I'm going back to bed now, I need to sleep. (I have to get up at 5:00 AM)
about 20 minutes later.....
Beth- HELP!
Me- quickly getting to her side Whats the matter?
Beth- Can't breathe!
Me- Lets put your cannula back on. Breathe through you nose. deep breaths.....We finally get her O2 levels back up in the 80's range, and I go back to bed.
This repeats itself 3 more times with little variation..........
Finally, at about 3 AM, I find her cannula wrapped around her right hand. She says she can't breathe. I get it back on, and she asks for meds, which I give her, and we get the meds washed down. She is still breathing through her mouth and her blood O2 levels arent' coming up out of the 50's range, so I put the O2 line in her mouth, and the levels slowly come up. She starts to get out of bed again........ I am now a little frustrated...... I raise my voice a little and tell her that she MUST stay in bed, and she MUST leave the cannula in place. I tell her to stay put, and don't mess with things. She says ok and goes to sleep.
My alarm goes off at 5 AM. I wake up our 22 yo daughter and she takes my place on the couch so I can get ready and go to work.
I am tired. and yes, I am complaining.