Friday, May 11, 2012

So Frustrated

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.



6 comments:

Rosemary said...

looking gorgeous Ashlea, love pose #2 <3

Michelle said...

Just wanted to let you know how much I love your blog. I love coming home to read the amazing achievements you've managed each day!

I'm praying for you, Murray and the girls. I so want you to all have the "happy ending" you so obviously need.

Also, I have to say... I want pie! I want beef jerky!

Becca said...

"We never do that..." can only ever really be met with "Well, we do. Deal with it."

Fetch him home, let them cope with what comes next. If their policy/procedure/practice is hurting your family, then why the hell not make them change it?

The Trousdell Five said...

You have every reason to be frustrated! I often wonder what has been charted about me in terms of my son? "Mom is a blubbering mess?"!!! Ashlea's glasses and hair are just too cute! I hope the return to school goes well!

Shasta said...

Totally. When I was on hospital bed rest, I had out-of-town visitors and I wanted to show them the cool aerial tram that connects two parts OF THE HOSPITAL but they wouldn't even let me do that because I was "in-patient." Like I'm committed, or something? I can walk out of the hospital whenever I damn well please, thankyouverymuch! But, I was a good girl and stayed put. :P

I'm so sorry you can't jailbreak him for Mother's Day. :( BTW, I just finished reading "My Stroke of Insight" by a Harvard neuroanatomist who had a stroke — pretty amazing stuff. I hope to write a review on my blog soon, but... you know how those things go. :)

Susan, Mum to Molly said...

I second Shasta's recommendation of Dr Jill Bolte-Taylor's book - I can loan it to you if you like.

Hers is an amazing story, and here is a link to her TED talk:
http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

Hope your Mothers Day is OK, despite the Hospital's roadblocks.

Hugs, Susan xx