Friday, January 14, 2011

Our new life 3 months on.....

Hard to believe, but its been just over 3 months leave since Shane had a huge chunk cut out of his brain.  I don't think I posted images, so here we go.
This was the toomah from the side.  When they injected the contrast in, it really made the whole thing pretty obvious huh?

I think they cut a big chunk out, and then dissected around the light/dark boundary to ensure they only removed a very minimal amount of normal tissue.
This image still scares the crap out of me (unfortunately it doesn't have the ability to scare the baby out of me....) and I am shocked at how well he is doing.
The boy wonder (otherwise known as the neuro registrar) showed me this before I counter-signed the consent forms for surgery, as at the time Shane was only giggling, couldn't form a sentence, and couldn't really hold a pen.

Now - you would barely recognise him from that pre-surgery guy.  His hair has grown back, and the scar isn't that obvious.  So people look really weirdly at him when we are doing the shopping, and I get everything out of the trolley. I'm sure they think he is a horrible man making his 40w pregnant partner do all that bending and lifting, but it really hurts his head so I have to.

He looks pretty normal, but gets grumpy so quickly.  This is softened in that he also gets rid of his grumpiness just as quickly, so thats a bonus.

He is sleeping better at night, he pretty much goes from 10pm til 6-7am most nights, and doesn't need pain relief anymore through the night, although he is up first thing to dose up.  And he still has to nap for 3-4 hrs a day, in between taking it really easy.

His executive decision making is probably most affected.  He doesn't think through situations as well, and can't really make good decisions on the fly.  So unless we are well organised with a list, or a sequence of events, he flounders, gets frustrated, and then fatigued, and then grumpy.  So I have to step in and be the grown up which is a total PITA. 

Tiredness makes everything worse - it magnifies all the little things by 1000%, but thankfully he hasn't had any seizures (that I know about.......) since his episodes about 8w ago.  I'm hoping our impending arrival doesn't put too much pressure on his sleep.

So - really, in a diabolical situation, we have really come out OK.  I have someone I can live with until we are grumpy old people in a nursing home.  He is able to look after himself really well, and in time, when the fatigue subsides, I'm sure I'll be able to leave him at home again with the kids.  Hopefully in a year or so, but that will depend on when he is permitted to be behind the wheel.

Life has changed.  I'm a real live grown up.  The buck totally stops with me, and thats scary.  I never realised what it would be like to the only grownup in a relationship - and its exhausting.  He does help, and thank goodness for that, but I know the grey hairs I know have are well-earned.
#3 is due today, and I'm not getting any good niggles - I think its because I just really don't get a chance to relax, and the fight or flight reflex is strong in this one master.....
So everytime Baby thinks it might be time, Hamish wee's on his sister, or Jenna throws something in a tantrum, or the cat brings in a dead animal, and reality kicks back in and I know that I just can't afford the downtime - so baby doesn't make an appearance!

I don't know her, but Lori, from has just been through a terrible ordeal involving the loss of her husband, and it makes me realise how bloody lucky I am.  I got through what she has gone through, and came out relatively unscathed (in that life is functional, and I can get used to the new normal).  My heart breaks for her, and it still sends me into a panic about how close I came to being a "widow" with 3 young kids, or worse still a mother to three with a severely brain damaged other parent.
I am lucky.  And I do believe in miracles, but I don't think Shane's health is a miracle.  I believe the strength I have been able to find through all this was really God's gift to me, and its more amazing than anything else.  Because of all the prayers for our family, I have been able to hold it together and the little men in white jackets haven't had to come and get me, and put my kids into foster care.

So 3 months on.  Life continues with just as many emotional and spiritual challenges and this is the new normal.
Now we just have to find a way for my body to let go, relax and let this new bubby come into our insane family.


Nikki Elisabeth said...

Geez Fi! You guys have been through a TONNE! Sounds like you are coping pretty freaking well despite it all. Lemme know if there is anything I can ever do... err... from here. xoxox

Lou's Mum said...

Wow, that's amazing. You've all been through so much. And what you've had to deal with (and continue to deal with) while carrying a bub and parenting two others is just crazy! I hope bub arrives quickly for you and life can begin to be even more normal again soon.

Sam said...

You’re an inspiration Fi. I don’t think I would have been able to get through what you have without the intervention of the men in white coats... Keep on keeping on and come on baby - it’s time!

Julia said...

That scan pic is impressive, no? Fiona - you are amazing. I don't know how you've kept going to be honest, your family are so lucky that you are who you are. And baby - your time for cooking is up!