Friday, April 20, 2012

T +22 What a day

I survived the day and managed to get my patients to their various locations in a timely fashion. It was a little soul destroying in the process though.

Ashlea is hating her daily blood tests.  All her veins are shot from constantly being accessed so it usually takes a couple of goes to get the blood out - by which time she is screaming and sobbing hysterically, crying out 'MUMMY' - as if to say Why are you letting them do this to me Mummy - and all the while I am holding her down and letting them do it to her.

I know it is for her own good but I really hate that I have to do that to her.  Every day.

Murray's blood test was less traumatic but it still somehow sucks a little bit out of you every time you have to spend hours in a doctors waiting room.  I kept thinking we should be at home enjoying the last day of the school holidays as a family - not waiting for blood tests while on our way to rehab.  At least the results showed his kidneys are continuing to head in the right direction (I think his creatinine was 370 ish).

Murray is now an inpatient at Mt Wilga rehab hospital.  I don't think he is in love with the idea of having to stay there.  It was really hard to leave him - especially as he still doesn't fully understand what happened to him or why he needs to be there.  Again - it's for his own good - but I still feel like the bad cop!

This is turning into a whinge isn't it?

Unfortunately I'm not done yet.

When I got home Emma tripped over Ashlea and landed on her belly - where the kidney is!!!  She seems  fine and I am trying not to worry but part of me is tempted to drag her out of bed and rush to the emergency department 'just in case'.  I feel guilty for not taking her in, but I just couldn't face it.  (Kidney friends please feel free to tell me if I should take her).

As usual I couldn't get through days like today without all your support.  Today alone I have had a friend come at the crack of dawn to sit with Murray and the girls while I took Ashlea to bloods, another friend drop in to visit Murray, a friend research respite options for me, Grandma come and watch the 3 girls all day, another friend drop in with a lamb roast for dinner, several friends ring to ask how things are going and another 2 friends bring around a load of groceries.  THANK YOU ALL.  It makes days like this survivable.

8 comments:

Deb L said...

And friends pray for you. Lots. We won't stop. Sorry to hear it's been a big day. Hoping for an easier one tomorrow.

Anonymous said...

What a day indeed! Good to hear there were lots of rays of sunshine amongst the rushing around and the emotional lows. Keep holding together Alison, you're doing an amazing job caring for your family.
It's great that Murray's numbers are coming down, that's really encouraging. Please tell us Murray is able to have his bloods at Mt Wilga and you don't have bring him back to Westmead every day....

Still praying
sue

Susan, Mum to Molly said...

No real wisdom on the kidney bump, sorry - but my gut feel is that if she's not showing any signs of pain/redness then stay home and maybe just mention it when next you see someone from the transplant team...

Re: Murray - sorry you are in the position of having to be the bad guy. Could you perhaps make up a short social story/video for him explaining (briefly) what happened and why he's there...? (Yeah right, like you've got time for that... Want me to giveit a go?)

I sincerely hope that today will go down in history as the craziest day for you running around, and future days will be easier - logisitcally, but also emotionally. It o's very hard having days when you just keep being reminded of: this so not what we were meant to be doing right now.

Big hugs my dear friend, Susan xx

Anonymous said...

Hi!
I have followed your blog for quite som time, but never commented before, and today I felt like I should :)
Don't know about kidneys, but my daughter is liver transplanted, and the liver lays in the middle of her belly, all the way down to her belly button. She has fallen maaaany times, and I worried a lot in the beginning, but the doctors reassured me that it could take it. And I think the liver is a more "delicate" organ then a kidney, (since it being a bleeding organ). So, I don't think there is need to worry. But of course, if you really are concerned, a phone call to the doctor can't harm ;)

Greetings from Grethe, Norway.

Anonymous said...

Alison, Each day I pray for you in particular, that you'll hold together in the midst of this.

As an aside, I have been given some Pumpkin Patch vouchers which I will not use (my boys are too big and too male!) - I was going to send them to you but was also nervous about doing this because they are time limited and adding "go to PP" to your list seemed pretty counter-productive. Instead, could you tell me what size/s to buy and I will just buy and send?

(I am not fussed about whether I get stuff for one or three girls and feel no need to buy for any child in particular, but rather to be useful; I tend to find my oldest child needs more new stuff because the younger gets hand me downs, so whatever works best for you is good with me - likewise if there is anything in particular you need just say so!). If you prefer to email, my email address is firstname.lastname @ gmail.com

Thanks, Margaret (and Byron - should help you identify the last name!)

Big brother, Little sister. said...

alison, much love to you all. Hope Ashlea is fine and was strong enough to cope with a kidney bump :) you are so brilliant being so strong for your family. I think you would make an awesome cop!;) hope Murray continues to improve physically and mentally things fall into place a but more with his understanding of what has happened xxx

Sarah said...

Wow, what a day indeed!

Hope Ashlea will be okay from the fall x

Marie said...

I'm continuing my prayers for you and your family.