Sunday, March 20, 2011

It's starting to sink in...

That I am going to be Ashlea's donor.


I have so many new things to worry about now. 

Will I pass the medical?  Will I actually be able to get in the MRI scanner without having a claustrophobic panic attack?

What if something happens to me?  What if I die?  Or have an 'adverse event' that leaves me unable to take care of my children?

Not that I care particularly if something happens to me as such, its more that I am Emma and Audrey's mum as well as Ashlea's.  I need to be around for them.  I need to be able to be their mum.

And then there is the whole How will Ashlea cope after surgery without me around?

How will I cope not being there? 

I am the one that Ashlea looks to for comfort.  I am the one that knows her best.  I am the one that can read her the best.  I am the one that knows what is normal behaviour for her, and what isn't and should be investigated by the doctors.  

I won't be there.

I need to be there.  To keep watch on the doctors and the machines and the numbers.  I am SO in need of knowing the numbers.

Creatinine?  Sodium?  Urea?  How much urine has she passed?  Is my kidney working in there???

I seriously think they should have a video link up between our rooms.  I will need to SEE her to know she is OK.  Just quietly we will likely do our own video link between the rooms - 2 laptops plus skype = happier mummy.

Have any of you ever not been able to be there for your child after surgery?  How did you stay sane?

** We will be at separate hospitals for anyone wondering why I won't be there.  She will be at the Children's hospital, I will be next door at the adult hospital.


Missy said...

Alison, I can only try to imagine how you are feeling now. The stress, the worry, the procedures....add to it the stess of not being Ashlea's main carer after the surgery. Wow, it just blows me away even trying to imagine any of it.

I have always been there after any of Missy's procedures. For the very same reasons, I know her BEST. Our procedures have always been so minor in comparison to the journey you will begin, so I have no answers for you at all...sorry!

I can imagine you will have so many people offering to help, prayers and best wishes. I hope that you all come through this without a single hiccup.

Now that you have the news that you are a brilliant match, when does it all begin for you and Ashlea?

Definitely think you need skype between rooms!!!

hugs to you all xx

Becca said...

Oof. That sucks deeply.

Given your role as her mum, let alone Ashlea's additional support needs, is there not any way at all that you could be cared for together? I can't imagine that there's anything you'd need that the kids hospital couldn't take care of - after all they'll regularly take care of young people who are physically adult eg 16-18 year olds, and your presence would be a big help to Ashlea and her care team.

Failing that, video link for sure. CCTV maybe?

If she doesn't already, you might like to make Ashlea a communication passport, it's a way of outlining in a few pages any of the essential things that someone supporting Ashlea should know, like what she finds particularly stressful/upsetting, how to help her cope when overwhelmed, any words/phrases that someone new to her might not fully understand and so on. Might be useful while she's in the hospital.

Sarah said...

Alison, all very worrying concerns you mentioned.

I really hope it all goes as smooth as it possibly can for both of you, you have enough on your plate, you don't need this extra. So sorry Ashlea and your family are even having to face this, so very unfair.

I don't need them for my MRI's but lots of adults at my hospital have GA's for the MRI due to the same reasons. The mask they put on your face doesn't you think they might put you in feet first as thats what my mum had done not long ago for a similar area? Then at least your head isn't in there.

Thinking of you x

Molly said...

Dear Allison, I am sure nothing will happen to you, you will be fine, here is some virtual luck and strength ! Also I think (I hope I'm right) that after the surgery the donor is up pretty quickly, I just read someone else's blog or article or something but that would be something you could ask your doctors about? When do you they think they can do the transplant? I hope it doesnt sound weird, but Im happy for you that you are able to do something to improve your daughter's health, I would do the same if god forbid mine needs in, in a heartbeat

Belinda said...

Alison, the emotions, the questions and concerns, and then the procedures, etc, I can't begin to imagine how you feel.

To be able to do this for your beautiful daughter is such a gift.

Love to you all. Xx

Missy said...

Forget to mention....ask for some valium for you for your MRI!!!

Alison said...

Thanks everyone.

Missy - yes I will definitely be asking for valium!!

Becca - that is a great idea about the communication book. I will have to make a new one for her.

Sarah - feet first would be fantastic!! How do you cope when you have them??

Becca said...

MRI face masks are only if you're having an MRI of your head - presumably you'll only be having your abdomen scanned so no head immobilisation, and no reason not to go feet first. You won't need sedation or anything, you'll just lie still, listen to music. The magnet makes some loud noises but that's all - you'll be absolutely fine.