At this stage..

We're at a no. Not until they can work out and control these seizures.

I expected it; I'm better than I thought I'd be.

He got out of ICU yesterday and is now back to 'normal'. He remembers me yelling at him which is incredibly weird; usually he remembers nothing.

Friday 22nd January

It's funny with this whole road. Usually, I know what I have said and who I have said it to - but with this, I always have to check where the person I am talking to is up to - it all changes so fast!

They are saying that these seizures have been happening for awhile (how long is awhile anyway?) and that we'd must not have seen them. I have to wonder about that; because it's incredibly coincidental that, for the entire time he has been left alone these last few months (maybe an hour here and there maybe twice a week?), these seizures have happened?

My father loves my boys. As in, lives for them loves them. He was completely different as a parent - always working, never home, etc - but for my boys - nothing is too much to ask.

He has their photos all over his office and used to call once a day to see how they were. If he didn't see them for the week, he'd be up at our place first thing Saturday morning to take them somewhere. He loves those kids with his entire being and I'm sure him not seeing them is hurting.

It was R's birthday yesterday. We'd decided pretty early on that, whilst he was in ICU that we weren't going to tell him about R's birthday coming up. It would really upset him - and given there is not a damn thing anyone can do about it, we felt it better if we didn't tell him.

I'm glad we didn't.

Mum and J went a few times yesterday because he was asleep for most of the day. He required sedation for the MRI (restless) and, combined with the anti-seizure medication, made him exhausted.

Before we had R's birthday dinner the three of us went in. Mum is very real, like me, but clings to the hopeful world that my sister J is in. This is all like a scratch on the knee for her and he WILL BE FINE SHEL. I get why mum swings between us for support; she knows the deal and knows what is coming, yet sometimes it just hurts so much it's nice to live in hopeful land for awhile.

Whilst we were 'half time change sides' (you can only have 2 in ICU and we were rotating); Mum had gone to swap with J. Dad told me that he's thinking of not having a transplant.

'I'm a dud dad Shel' he says to me sadly. 'I don't know that I can go through with all this'

'What do you mean' I ask.

'The transplant. I don't think I want it'.

Some people are completely FOR saving life. At all costs. 'What do you mean NOT WANTING IT?? You are having it' type view. And part of me wishes I could be that person who steers our family to victory here.

But I can't. I cannot see it as right that I ask him to do it for me. This is his body, his life and his journey.

And seeing what I have seen - how could I possibly judge him for not wanting to continue the road? I will support him 110% in whatever he decides to do. Whatever that is. It is going to kill me when/if he goes - but I would feel incredibly cruel if he prolonged it to keep me happy. I will not do that to him.

Late last night mum called and told me that he'd been moved out of ICU and into a ward. Mum said 'who the hell leaves hospital at 10.30 at night??'

'The dead ones' is my reply dryly.

Transplant hopes - we have no idea. We have to wait for the tests to be done - there is a gastroscopy and a colonoscopy to go; but he needs to be well enough for them. They are pretty shitty tests for a liver patient - you have to fast, no liquid and they give you duretics to clean out your bowels which will probably mean weaker and in hospital - but the sooner it's done, the sooner we can know the next step - if there is one.

Seizures and other fun things

This week has gone from up to straight down. As is usually the case with liver disease, but I gotta tell you - it's exhausting. Mentally, physically and emotionally exhausting.

Tuesday he was booked in for a tap - I think I've already mentioned that he can't have medication anymore to control the fluid because his kidneys shut down - and had to be at the hospital at 8.30 Tuesday morning. Thank christ he was (at the moment, I'm kind of debating whether to thank christ, but more on that later).

He had a seizure. Two actually, but the first one was just after they marked him to put the tap in. Mum was there and got nurses etc who whisked him off to ICU. Again.

Whilst they were doing tests etc, he had another one.

So, he's in ICU and they need to do a CT scan and they find a dot. So, somewhere along the way, between various CT scans he's had, he's had an ever-so-slight stroke. How bad? We're not too sure yet; he's also on anti-seizure medication to sort out the seizures, and it is making him dopey.

As at right now; he's still in ICU and my mother and sister are in there. He was having a MRI scan this afternoon to investigate the blip on the CT radar.

I just hope that this doesn't knock out transplant hopes.

I went in this morning (only 2 at a time in ICU and I was working) and saw dad. I don't know if it's just me or what, but I am near on positive his face looks different. Whether it's me knowing it's a stroke or what - but his face looks like it's 'meant' to after a stroke. His eye has dropped.

Anyway, he is not very lucid but knows enough to know that A. I am not my mother or my sister and B. that he wants them. I was told to 'get out and call your mother and your sister and find out how long they are going to be'. I tried to talk him down, but he was having none of it. I couldn't hold it together anymore, so I had to leave.

His ammonia levels are through the roof; which is causing a degree of encephalopathy - but he still knew who mum and J were.

Just not me. Again.

And it's selfish and it's awful, but it hurts.

Badly.