Well, here we are on the other side of the fence. I never in a thousand years expected to end up here.
We got to the hospital at 5am to see dad off and we all howled. The three of us didn't expect to see him again because he was so sick. At that point, we didn't know it was going ahead; they prepare for surgery just in case because of the time factor. The other half of the team were checking out the donor liver for compatibility, so this could all have still been rewound and back up to the ward.
We said goodbye @ 7am and the transplant co-ordinator (Kate) said that we'd know by 8.30ish whether the surgery was a go or not. We hung around the hospital with the social worker for half an hour; then went back to mums to wait.
Sure enough; 8.30 rolls around and it's batter up. He's in. From that point, I could not have possibily sat around waiting for news, so I left mum and J to it and went into work. Brain was completely fried, but it was better than doing nothing.
Every couple of hours we received updates. 'Liver has been disconnected/new liver connected but not running/liver up and running/liver put into his body/stitched up' All of a sudden it was 4pm and we were asked to meet the surgeons at ICU.
'The operation went exceptionally well' we are told. There were still issues with the kidneys; whether the 'old rattlers' would hold up after they threw a wobbly. All the organs were expected to throw a tanty; but whether the kidneys threw their final wobbly was the worry. They couldn't 'kick start' it this time; the liver was far too new to be pulling blood from, so the plan was to go straight to dialysis and get a kidney transplant.
That was Thursday.
We're now at Sunday and things are still looking really good. I still can't get my head around actually being here; whilst we have had positive news thus far, we are still concerned about the kidneys; but the longer they remain working, the more likely they are to remain working.
So, we wait for him to get back up to the ward and then home - then we attempt to pack up what is left of our lives and move on with it.
It has only been the last week that I have really seen just how tattered it all is. I hope I can put some of it back together.
Showing posts with label the elusive transplant list. Show all posts
Showing posts with label the elusive transplant list. Show all posts
Saturday, March 6, 2010
Wednesday, March 3, 2010
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?!?!!
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?!?!!
Sunday, January 24, 2010
D-Day
Gah.
The surgeons want to see us @ 9am Wednesday.
I'm not sure whether it is 'this is how we do it' - or whether it's 'sorry, he's had a stroke, he's out'.
D-day. and $20 says I won't sleep till then.
The surgeons want to see us @ 9am Wednesday.
I'm not sure whether it is 'this is how we do it' - or whether it's 'sorry, he's had a stroke, he's out'.
D-day. and $20 says I won't sleep till then.
Friday, January 22, 2010
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.
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.
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