I have been trying all week to speak to Murray's therapy team to try and get an update on how he is going and see if I can bring him home overnight for the weekend. Finally I got a message from the nurse today saying the doctor said no to overnight leave. She seemed surprised that I was not happy with that answer. The only way I could get to speak to the doctor directly was to ring his secretary and tell her I needed him to call me with either a very good reason why Murray can't stay home overnight, or to tell me what the consequences would be if I just didn't return him. That got his attention and I got my phone call but was met with an unbending "We never do that, he is funded as an inpatient, blah, blah" bullshit excuse. Sorry for the delicate among you who don't like the swearing - but seriously isn't that the most crap excuse you've ever heard??
I am so frustrated and disappointed. I was really hoping Murray could come home Saturday afternoon and stay until Sunday lunch time. It's Mother's Day on Sunday - it would have been so nice if we could have all been together on Sunday morning, but it's not going to happen.
Once I finally got the doctor on the line I made sure I got an update about how they think Murray is progressing. The therapy team are all happy and can see that he is making progress. They feel he should stay as an inpatient for at least another week and then possibly look at coming home but going back as a day patient 3 times a week.
I'm sure the doctors up there all think I'm a nut case who is totally not coping with this whole situation. Murray's file already notes wife is understandably very angry - which is kind of funny seeing as I'm not angry. It's just that on the day that was written the doctor had told me I would have to drive Murray back to Westmead every week for his kidney appointments and I had told him in no uncertain terms that there is no way that would be happening unless they could perfect cloning or time travel in the next 6 days. That became wife is very angry in the notes. Today I had a total meltdown on the phone with the doctor when he said Murray couldn't come home - it will be interesting to see if that makes it into his notes :)
Ashlea had bloods today and her numbers were stable - creatinine 36 and tacrolimus 7.5. She is still doing extremely well and will have her first day back at school next Wednesday. She is so ready to go back - she spends her days talking to Talking Larry on the ipad and watching this Kittens video on youtube which she (all of us actually) can recite word for word. She is READY to go back to school!
And to finish here is some Ashlea cuteness - new glasses - just in time for her return to school.