Tuesday, December 29, 2009

Christmas roundup

I know it's belated; but MERRY CHRISTMAS!! I hope you enjoyed time with your family, far too much food and lots and lots of paper rubbish. Ours didn't turn out half as bad as I thought it would (that bottle of Oyster Bay probably helped!!). It was quiet, reflective and, well, OK.

Santa came here for the kids; both got scooters and a few other bits and pieces. C also got a potato and a stick.

Let me explain.

In our house, if you're naughty, the birds (in which there are many around here) will tell Santa who, if he decides you've been naughty enough, will leave sticks and potatoes instead of presents. C was all 'oh sure he will; watch me get presents' - and to G that was a red flag to a bull. So, out came the sticks and potatoes.

He sucked it up which was good of him - 'Mum, that could've been a motorbike but I was naughty - maybe next year'. That's right sunshine.

Santa also came to hospital this year. I don't know where I'm up to with that saga, but he went into ICU, came out and then went back in again; so there was no hope of him coming home for Christmas. I was a little concerned Christmas Eve; he'd worked his guts out to get home for Christmas and it didn't happen and I was a touch concerned that he'd given up. But no, he was there for Santa in the hospital and, whilst there were a few tears, everyone bucked up and got on with it.

After that, the day was pretty much 'normal'. Lots of people went to see Dad, so he wasn't alone and we had the Christmas lunch thing. I had a sleep, then we went to G's brothers; where it was basically an orgy of $5 crap that the kids didn't need and a whole lot of nothing being done by the 2 wicked SIL.

G and the boys went to the farm Boxing day and I was all set for a quick hospital visit and then home to box up this house. Except, whilst I was in the hospital, we had a fire. I know; ridiculous huh?

Not much damage caused and we are all Ok, so that is the main thing. It's just a big pain in the arse really. But all the neighbours pitched in to put it out and get my dog (who wouldn't get out until Kirsten turned up and then jumped in her car refusing to get out until I came) which was all very nice. The boys next door even offered to rebuild it all for me; but I think G's brother J is going to fix it.

I'm back to work today which will be riveting.

Joanne will probably be paid for the forseeable future; mum needs her around, so that's what will happen. I have decided to just keep right out of it. If M asks, it's something he needs to take up with my parents.

I'm really ready for 2009 to be finished now. I am precariously ticking the days off; something is bound to happen between now and New Years, so I am being careful and watching what I do. Apart from Riley starting school; this year has been awful.

Roll on 2010.

Wednesday, December 23, 2009

A little bit happened today....

I start off thinking 'oh I feel bad for writing this whingy whiney blog that has turned from something so nice into something so maudlin and lonng' - but then I think 'my blog, my rules'.

So, I'll apologise in advance. It's whingy. Again.

There is some good news today; we are now on a critical list for a transplant (which is not quite *super* urgent - I figure Saturday night he'd have been 'super' urgent given he was 4/5ths dead because that's the system!) and whilst he is still in ICU; they are starting all their testing for their profile for the transplant. He is now under the 'LTU' - Liver transplant unit and no longer fucking around with gastroenterologists who want to 'see if this works' or liver specialists who are completely fucking blase because they are sure he's drinking and we are just fuckwits who don't know any better...

They have told us 'early in the new year' which I, at first, thought to mean April/May (it is the public system after all); but when they started gung ho profiling - it might be earlier than that?

But I digress. He's in ICU more for the machines now than for him; the oxygen levels in the wards don't go as high as the ones in ICU; and the team want to have a bit of leway if something goes pear shaped quickly. So, he's in there on a lower setting; but because of the lack of stabilisation, he's still getting sedated (twighlight I think they called it? and no, not the vampire) just to keep him calm enough to stable him. Once they are confident about the stability and the lack of oxygen, they'll throw him back up to level 8.

I'm in a whole other place with this at the minute. I am not hoping; but I am not pessimistic either. I am not speculating in any way shape or form anymore - because the roller coaster is bad enough; let alone adding to it by 'maybe or might'. We just do not know if he'll A. make it TO transplant; B. whether he is a candidate for transplant (high BP,diabeties and the kidneys which could all be liver related, but is a question of chicken or egg) or C. Whether he even wants a transplant. He bounces between the two, depending on the day; but the psychiatrist saw him today and hopefully seeing him will at least set him right in his own mind.

I have no opinion one way or another. If he doesn't want the transplant; how could you blame him? He has had 3 'good' weeks this year - all spaced out in individual days and all 'good' enough to go to the supermarket. Awesome. I don't know that I would want to keep going either. And I am starting to be at the point where I don't need him as much as he needs this to stop IYKWIM. I am starting to feel cruel.

But, on the other hand, if he wants a transplant, then I'll be right there with him. Duh.

We got a massive book today with regards to 'transplant and you - what to expect' type stuff; they had about 4 pages of quotes from past patients/families. And it was ironic that today was the most alone I have felt for a long time; reading these quotes and reasonating with so many of them; made me feel A. less alone and B. Less freaky.

The beautiful beautiful Jayne lost her father today. I think of her often and wonder whether she feels similar; or whether it's just me that wishes sometimes that he'd just die and stop torturing himself this way. I'd love to sit down with her one day, when it's all done and dusted for both of us, sans kids, with lots to drink. One day.

Tomorrow my sister, mother and I have a counselling session of our own. I have no idea what to expect; but if it's anything like the first social worker, I'll just about punch her. After 6 attacks, we see her and she's 'oh here's a booklet'. Well we fucking HAVE that. 'oh well, you're managing beautifully' - as the crazy man looks for his dead father. But I have no expectations of tomorrow; it's such a long time away.

We started off weeks by weeks, then day by day; now we're morning by afternoon. Soon, I am starting to think, we'll be hour by hour.

Obviously he's not home for Christmas this year, which is killing him; but until he can be stable he cannot leave. And he's not out of ICU yet, so there is no hope they are going to let him out of ICU tomorrow and then home for a few hours. But, again, who knows.

Monday, December 21, 2009

Best laid plans go astray

We had such grand plans.

We had spent the morning at a birthday party and an afternoon at home, playing footy with the Christmas CD on, making ice cream cakes (and sundaes!!) and being a family. The kids were showered and in their PJ's, excited about Santa coming and all the fun the day would bring.

G had gotten Monopoly junior down; we were going to have home made pizza and a night of monopoly (although C was bound to get bored!). We all needed this reconnection and all were looking forward to it.

I had just put the kids pizzas in the oven when the phone rang.

'You better come and have a look'. He was fine yesterday! Very fat (lots of fluid, he was scheduled for a tap this week after seeing the liver unit), but sharper than he'd been for awhile. Surely he's not that crazy?

With a sigh, I put my oven mitt on the bench and told G. But I also told G that 'maybe we'll try and manage it at home. It's the Saturday night before Christmas; we're going to be in there for days'. Kissed the disappointed children (and husband) goodbye and thought I'd be back sooner rather than later.

I walk in and his eyes have rolled right back and he is drooling. Drooling!! My father is drooling!! He's talking to his dad again (who has been dead 12 years) and I had a passing hope that the bastard (my grandfather) would take him with him. As if.

We call the ambulance; a little more worried than normal, because it's been so quick. Off we go; mum riding in the ambulance and me following to meet them there. We get there and, of course, it's flat out.

Except this time we don't have to wait around. We are wheeled directly to a private ER room where he's hooked up to all sorts of machines. He's not responding to pain stimuli (or any other stimuli for that matter) and he's not concious.

They test, examine, test, examine and come in and tell us that he's suffering from enchelapathy again. Well DUH. But they don't quite know why it's happening so quickly this time. He's starting to struggle to breathe; they ventilate 'just to be safe'. They can't do a CT scan because he's too sick, so at this point they are assuming he's had a bleed to the brain. We are kicked out alot this time too; and very quickly it went from 'oh we're old hacks at this' to 'I think something is really wrong here'.

By 11.15, Alvin (the liver specialist who is someone we know, and initially we cannot believe our luck that he's the one on tonight) sits us down and explains that he has either one of two problems. A. the blood vessel to the liver has clotted (blocked) and we need to unblock it using warfrin (blood thinner). This is all completely reversible yada yada yada but that he thinks it's time to expidite the transplant profiling. They cannot stabilise him, so they are going to sedate him to A. assist with the stabilising and B. give his body some rest. Oh yeah, we think he needs a moment in ICU.

ICU? Fucking hell, what is going on here?

Alvin tells us to go home; they will not move him anywhere until he's been stabilised and that he will call if there is any change. The prognosis is promising, although, no committment is made to him pulling through.

I've called my sister in by this stage, and, as only she can, she falls apart. Dramatically as usual and she's wailing that he was talking to her yada yada yada. She is alarming Alvin, so we pick her up and walk down to the carpark. I am silent at this stage, wondering just what to make of it all.

It's now just past midnight and we're at mums just digesting what has just happened. Mum tells us all to go home and get some sleep, and I think this is all very practical. So, I get in the car and start home.

The darkness is comforting; I feel dark, so it's nice that the world agrees with me. I have no music on; just the humming of my brain is my company. I hear a noise and wonder what the hell is that? Turns out it's me. This gutteral wail is coming from my mouth, but I can't seem to stop it. It hurts to breathe, and it hurts to stop it.

I text my friend; there is no way I can go home to a house full of sleeping family. I turn up at her house and literally collapse. Her and her beautiful husband carry me inside, and just cuddle me until I can control this...noise. We talk for hours.

6.30am we are back at the hospital, but up to a whole new floor. The ICU unit is locked, with a speaker and a large waiting area. We are too early; wait 20 minutes please as Alvin has just come. So, as per hospital protocol; we wait.

Finally we are allowed in to see him. It is a mess; machines everywhere, 18 tubes coming out of his mouth and he looks peaceful. I tell Dad that he better not be staying on our account and that I promise to look after everyone. I then start to lose control of the gasping and have to leave.

Alvin comes out after awhile and sits us all down. This time, it's renal failure. Decent possibility of reversal, and some good drugs availiable, but they need to stabilise him before they will try them. They will divert blood from other organs to give the kidneys a foot in the backside. They won't wake him until tomorrow afternoon and re-evaluate; but at this point, he is soooo not coming home for Christmas. He'll be lucky to be out of ICU by then.

Relief. We won't be in emergency at least for Christmas.

We thank Alvin and go home. I've turned on auto pilot and get home to an empty house. I busy myself, doing stuff that I know I needed to do; but not thinking one iota.

Eventually the mask cracks and I am gasping again and my chest hurts. I go to bed, where I cry like I have never cried before and drift off to sleep, with my fingers crossed that he'll die in his sleep and this cruel disease will leave him alone forever.

Monday, December 14, 2009

It's beginning to look alot like Christmas!

It finally feels like Christmas is upon us. Decorations are out, cards have been sent and presents have all been bought and wrapped. I'm happy we made it here; and not only did we make it here, Dad is good.

I know that it's day by day, and that he's still a pretty sick man; but for the moment; he's well. Which is an awful load off. He sees the person who will decide whether he moves up the list for a transplant or not.

I'm a little bit...weird? about him being well; I think I'd like for the doctor to see him at his sickest; after all, two weeks ago, my mother wasn't sure he was going to get to Christmas. Yet now, he's looking really good. And it felt really reassuring to be over that fence of 'lets try x,y,z' - into proper 'waiting for a transplant'.

Connor finished kinder for the year; he's a bit miffed actually, as he was pretty sure that he was on his way to school next year. 4yo kinder to him is going to be an obstacle for him getting to school - and I have a funny feeling that the whole year is going to be viewed like this. A big pain in the butt that he has to tolerate until he gets to school. He's looking forward to Santa coming with a vengance.

Riley did so very well at school; he aced prep and has grown into a boy that I am so very very proud of. If I could put into words just how I am feeling about this boy right now, I would. But all I can say is that my heart is bursting with pride.

I love that they both still believe wholeheartedly in Santa; I'm loving that they both get it and are both being swept away by the magic. It's also a beautiful thing to take both their minds off their grandfather.

Christmas day will probably be spent at mum and dads; provided we can keep him out of hospital for Christmas. It's only going to be us, my parents and R & J - people who have known my parents for 35 years. So, no one that Dad doesn't feel comfortable with; and no one who hasn't seen my father at his worst before. Then we're off to G's brothers house for dinner; which is going to be really nice, given the other 2 IL's aren't coming. It might be there that I succumb to this increasing need to write myself off for awhile. If I only had a day spare to be hungover. ;)

Once Christmas is done, we start really moving forward with the packing. I think the kids are going up to the farm for a few days; I'm looking forward to it just being me here. I'll have to work for some of every day; but having my own 'holiday' every evening is something I am really looking forward to. I will go up after work New Years Eve and spend NYE with the kids and Grants family.

Thursday, December 3, 2009

Same horse, different rider

Dad's home (again). We now have the fun job of trying to REALLY minimise all sugar; because the lactulose is sugar rich and he needs it, his diet now has to try and compensate for the lactulose. Which means pretty much bugger all sugar in his diet. Oh yes, and low sodium. As in minimal.

He walked out of the hosptial being told to have 'no sugar'. WTF does that mean? How can one have no sugar? His sugar rate today is 19 - and that is with no sugar & one piece of fruit all day; so I think this may be the standard sugar level for him. But, it's all trial and error, just like everything else.

My sister doesn't think I am being fair making him eat porridge for breakfast - he doesn't like it you see. I'm in the 'big shit' camp - *I* don't like him being in hospital either, so we're even. Mum is just fubby dubbying along; so again, it falls to the older responsible one.

I'm hoping to finish my Christmas shopping today. I have never been so unorganised. Usually by this time I have cards ready to send, presents wrapped and can actually do some baking and festive type things; this year I am being dragged by the hair towards December 25 and I cannot stand it. I just want to move house; because you see, I have it in my head right now that life as I know it will come back when I move. Hah.

Packing for the house is going slowly but surely. Most of what we don't need is packed and G is going to start shifting it into the new garage this weekend; we can't really do a heap of that until after Christmas/New year. We're still using a heap of stuff you see, but once I know what is going on for Christmas, I'll be able to pack/sort more stuff.

I'm debating the doctor again; I am starting to have panic attacks, not sleeping and find it difficult to control myself; both in anger and tears. I realise that it's all due to the pressure I am under; but there is very little I can do to ease that pressure. I don't like the idea of 'oh, just take a pill and you'll be fine' - but at the moment, that's all I feel I can give myself. I dont' have time to fall into a hole and I certainly don't have time to work through it all on my own.

Jayne talks about her father ino this post; so much of what she says resonates with me. Watching this strong, fit, stubborn bugger end up a shell of his former self is almost too much to bear; If I had to watch my dog go through this, I'd put him down for his own benefit. Yet, us people, the most important race of all (in our own lunchbox) makes us go through hell and back before we say goodbye. *I* struggle with it - I can't even begin to imagine what Jayne goes through every day.

Lately I have been wishing he'd just die and get it over with. Not for our benefit; but for his. If he remembered that I have seen what I have; he'd be completely devastated. If he knew the street was watching when he got put into the ambulance, it'd kill him. If he heard the sympathy in so many voices asking 'how is he' - he'd be pissed off. If he heard some of the things he has said to us; he'd never look us in the eye again. Living the way he is; it's everything he didn't want. So, why are we all here?

I'll fight for him as long as he wants to fight. But, I think he's giving up; rendering it a hopeless cause. And, it probably is. But the realisation that he is not going to get over this is dawning faster and faster; and that is the hardest part.

2009 was meant to be a good year. So far as I'm concerned it can fuck right off.