Wow. All over Wow.

Wow. From that last entry till now; wow.

From that point, Dad lived in the hospital. The director of the ETU stated that if he went home, he'd die; that they didn't get sicker than him, it was going to be a hard week, and that he was at the top of the Victorian Donor register.

He stayed in hospital having twice daily blood tests to test for ammonia & potassium levels. The potassium levels basically just tell us how well the kidneys are functioning.

He was pretty stable until Friday when the potassium levels reached dangerous levels - implying that the kidney was about to shut down. So, back into ICU we went; but this time, it was only for 24 hours. Which was a massive improvement to us managing at home. So, it was a real eye opener having him living in hospital - it was literally saving his life.

Last week was also Organ Donor week. We met a guy who had been through all this, lived in hospital like Dad for five months before receiving a liver. It was really reassuring for all of us to know it was all normal. That he wasn't the only liver patient to be almost dying. We got a great deal from this man and I will be indebted to those like him forever.

Dad picked up again and ended up a bit over 'stable'. He was almost 'well'. He got a bee in his bonnet about redeveloping an old house he owns; to the point where he was calling builders from hospital. The lovliest bloke I will never meet called to ask if he was Ok and is now going to humour my father by telling him he is going to help build his house.

It's like he was going 'oh, well I have a house to build, I can't possibly die whilst I have a house to build' and I really didn't want to burst this bubble for him. I'd already organised for one of G's friends to be a 'builder' calling him back; M was happy to take his calls and entertain him. Which was a beautiful thought from a friend - I just never expected it from the builder himself!!

This brings us pretty much to today.

He was tapped last night and didn't have a very good day today. He was scheduled for another gastroscopy this morning, but they cancelled because he wasn't well enough. He got moved into a shared room with 3 other VRE carrying patients. He was stoked. Then, nurse ratchet took away his water; her thoughts were that custard counted as a liquid and, because of that, decided he'd had enough water; even though both the ETU & his dietician said he should NOT count custard/yoghurt/full cream milk as his liquid, because he needed to gain weight. So, he was rapt with life.

At 9.25pm tonight my phone rang once and stopped. I am waiting for THE call, so I pretty much jump on it. It calls again; I snatch it up 'hello' - I get some muffling and then hung up. 'Oh fuck, he's dead and mum is a mess' comes to mind. Third time, it's mum. She's a little flustered and teary but she tells me;

'He has a liver'

I spin. Honestly, my stomach dropped and I had to run for the loo where I lost dinner. I burst into tears and I could not think straight. G gave me a kiss, told me to drive safetly and I went to mums.

We all get to hospital; we get a run down of where we go from here. As I sit here, half the team are harvesting (I know, it's an awful way of saying it!!) organs; they will prep Dad even though they don't know for sure they can even use the liver. 'It looks good' is all the information we get at this point, apart from the who's/what's/when's/where's and why's of the procedure itself.

We are told to be back at 5am if we want to see him before surgery.

Is there any wonder I can't sleep?!?!!

Home today!

Dad is coming home from hospital today. He has had another 12L tapped and will come home with a bag attached to him and an open wound so the fluid can drain out of him more freely than in hospital. With that though, comes a risk of infection; but we have found every single road we take has one risk or another.

He can no longer go on duretics because his kidneys will no longer tolerate them; they shut down and nearly killed him not so long ago. So, taps, along with the risk of infection, is the order of the day.

He sounds great and really with it today. Some days he's a bit slow; the encephalopathy messes with his short term memory. But sometimes, like this morning, he's great.

We are expecting him to be admitted probably next Friday. Not because we're pessimists; but we have to be realistic with these things too.

Next Wednesday, he has to have a gastroscopy for his liver transplant profile. This entails all sorts of anti-liver disease things; fasting, low fluid and a liquid that makes him go to the toilet a great deal. Given it's such a fine balance keeping him well at the minute, this test is pretty much guaranteed to put him back into hospital. May even be Thursday; but such is life.

On the flip side; this is one of the final tests that is required for the liver transplant unit. From here, we sit down with the surgeons who decide A. whether he is a suitable candidate for a transplant, B. whether they are prepared to do the transplant, and C. what his priority number is. The priority number in Victoria means so little that it barely rates a mention - it changes almost twice daily; because liver people can go from living quite well to almost dying in just a few short hours.

And that is what life is like as a family member of a liver diseased person. Slowly, over time, you stop planning things. Or, if you do, you make sure you have plans A,B & C as backup. Because, put nicely; you have no idea whether you are going to be able to fulfill the very basic of things.

I am taking a few days annual leave from work as of today. I have worked 60 odd hours for the last 6 months - in addition to hospital/christmas/moving house yada yada. I am looking forward to doing very little else than unpacking my new house and just pottering.

Another lesson - it's all about the small things.

A small piece of trivia I never knew; the liver has over 400 functions in the body!