So, we were in the patient hotel last night and neither of us got much sleep. I'm not sure why but it was so hot!!! I got up at 630am as we had to be on the ward by 8am. Showered sorted things out. When I came out of the shower, Rowan had a big grin on his face and told me 'i binished' (i finished). 'finished what Rowan?' 'Teepee' (TPN). He had disconnected his own TPN from his central line. This is incredibly dangerous for so many reasons, from a possible fatal line infection to a possible hypoglycaemic episode causing all kinds of complications not to mention the loss of precious calories! So chaos commenced and I arrived on the ward for blood tests to make sure he hasn't infected himself!! And an extremely stern talking to!
We had to be on the ward for 8am as we were having a lung vq scan. Well it didn't happen. There was a lot of technicalities that were causing problems for the last 8 months whoch is why this test is now 8 months late and today was no different. The gas that they use for the test didn't arrive. So the test couldn't be done. That was that.
There was a bit of a bed issue, Rowan needs a cubicle on the ward so jiggling patients around was necessary. They asked me if i was happy to stay in the patient hotel tonight and tomorrow night, save them a hassle, and meant I could come and go as i pleased. So thats where we are now. A little bit of a faff because I needed to connect hos tpn at the hotel and do bloods and then take the bloods straight back to the hospital, and then back again to bed. All a lot of messing about but its done.
Rowan isn't sleeping properly and so neither am I. He's not really doing is physio yet, we are still trying to get him to do as he's asked and not enter the gym screaming. So yesterday he screamed for 30 minutes. Today he screamed for 20 minutes. All I want is a plan and to know how bad this is, and how much realistically to expect from him. I don't want to push him to hard and make it worse. But I don't want to give in to him all the time either. I'm hoping that will happen soon ish. Maybe Friday. For now we just keep trying.
My mood is all over the place, rational, then irrational, I'm ok one minute and floods of tears the next. In control yet out of control at the same time. Trying to pretend its all ok when really its not! Lots to deal with. As usual. 3 days to go. That is all. This is how I manage hospital stays, I count down the days. 3 to go.