Tuesday, January 12, 2010

That place

Today we had to go to 'that place' (the Children's Hospital) for Ashlea's regular kidney check up.  I have a love/hate relationship with that place - I love them for taking care of Ashlea, but I also hate going there.  My whole mood changes as we are driving there - I can feel my jaw clenching and my stress levels rising before we've even seen a doctor.

Today Ashlea had to have bloods done as well.  I think I have posted in the past about how gut wrenching this is.  Ashlea just hates it and finds it so distressing. As soon as we arrived at the reception area Ashlea said to me 'Time to go?'.  She remembers.  She knows.

Today they were very short staffed and we were left with a blood collector who I will from now on refer to as 'the crap one'.  He tried a couple of times unsuccessfully to take Ashlea's blood.  Eventually I looked up at him and said 'You don't get any more attempts'.  Someone else tried, then someone else tried - and botched - a finger prick (how is that even possible?).  Eventually they called Florence (Nightingale in my eyes) down from the ward and she got it first try.  We love you Florence and will be asking for you by name next time!

The whole time (1 hour 10 minutes all up) Ashlea was sobbing and screaming hysterically, saying 'I want time to go' and 'I want say bye bye'.  We were both shattered by the end.

We then saw the kidney specialist.  Things are relatively stable.  Ashlea still isn't growing much length wise, but we are hesitant to start growth hormone due to her passionate hatred of needles (GH is a daily injection that I would have to give at home).  Her kidney function has decreased a little - but not heaps.  I am a bit disappointed that her creatinine has risen - its just that little reminder that she does indeed have kidney failure, and that even though it is still a way off we are on the road to transplant.  Sometimes I manage to completely put it out of my mind.  Except for nasty reminders on blood test day.

The current numbers (for my kidney peeps):

Creatinine: 237
Urea: 11
Sodium: 141
Hb: 159

Her phosphorous is still too low so we may have to add yet more phosphate to her diet.  She had to have a bone xray to check for rickets (which can be caused by kidney / phosphorous / parathyroid problems).  I don't really understand how it all works.  We don't have the results yet - hopefully she doesn't have any bone damage yet.

We were both very glad to get home after our stressful morning!  Poor Ashlea has a couple of huge bruises on her arm - including one that is black - from where 'the crap one' tried to get her vein.  Thankfully we don't have to do that again for another 3 months.


Sarah said...

Sorry to hear you had such "crap" blood collectors! How traumatic!

I understand you not wanting to give growth hormone injections due to her hatred of needles. One of my friends children is 10 and had brain cancer and has just started them.

Hope her bone xray went as well as it can.

Anna said...

You poor things. I can so relate to blood test day. We have one on Saturday, then a whole week coming up before school starts where R has to have all the bone density, kidney ultrasounds etc etc.
Grrr to the terrible blood takers too.
Thinking of you both x

Ally said...

What an ordeal. I'm sorry you guys have to go through this repeatedly. poor Ashlea.

I'm glad her results were relatively stable. How do you increase phosphate in her diet? I don't even think I know what phosphate is!

Big love to you both <3

Marie said...

Awful, awful, awful! I hate days like that. I'm sorry you had to do that.
I hope Ashlea has recovered by now.

Family said...

Augh! Hawke is a hard pick to . . it's always dramatic and I want to pull my hair out - sympathetic for all of you as you have to endure this more oftne than I. She is beatiful, praying for miracles. . .thank you for working so hard as a Mom - your an inspiration!