Tuesday, October 27, 2009

Dad's latest CT scan shows pancreatic abscess. The ascitic fluid shows that one of the pseudo cysts had burst, hence the muddy Milo water.

The doc has said that surgery is definitely on, it's only a question of timing. The aim is to clean up the peritoneal area to prevent infection, remove the gall bladder, open up the pseudocyst into the stomach, allowing the contents to drain from there, cleaning up the pancreatic abscesses.

From what I have read, the surgery itself is not quite the issue. It's what would happen AFTER surgery that is the issue. The risks of morbidity are high - as much as 30%. Doc has also acknowledged his reluctance to send dad for surgery since it would be akin to "taking one step back" since dad looks better after being on TPN. But reluctant though he may be, he said surgery is definitely a necessity, not an option anymore. He also warned us that dad will be "very very sick" after surgery so we have to be prepared for that.

By his reckoning, it looks like surgery will likely take place either end this week, or early next week.

I feel like we are all on tenterhooks here. I wish it would be resolved soon - one way or the other.

So to continue with the updates, so far dad has been taken off the pee catheter and has one Coop loop removed. That's the good news. The bad news is that his gout has come back and his blood sugar is high, hence the need for insulin jabs. Its the price to pay for TPN I suppose. More than ever before, I am amazed at how complex our body systems are and how much delicate balancing goes on in there everyday to keep the engines running well.

He seems more lucid than before, at least his hallucinations seem to be less frequent. Although just the other day, my sister had to leave the room in paroxysms of laughter because he and I were having a bizarre conversation about "blow-drying" Gillian's faulty high-tech phone gizmo. He said we should open the back, blow dry with a hairdryer and then put it back and no need to physically "rewind the tape". I figured that when dad was delusional, its best to just humour the guy and play along.

On his good days though, he can have a sense of humour with funny asides to our conversations. On his bad days, he becomes delusional. If he is not delusional, then he would be lucid enough to snap at mom, be petulant with everyone and lay the guilt trip on real thick and generally just be cuttingly unpleasant. He may be my dad and he may be ill but honestly, there are times when I wish I could give him a good hard shake! But since I can't do that, I have resorted to cutting short a visit or leaving the room.

I find that if I take breaks between visits, eg visit on alternate days, I am better able to take his orneriness. But poor mom, who comes everyday, twice a day and stays for hours at his bedside. She takes the brunt of it. My heart aches for this. So I aim to do what I can. On weekdays, I like to whisk her home early on the days I visit. Or go in her place so she gets a break.

But the star of the "getting mom to take a break campaign" is really my sister Vi. I really like it when Vi comes from KL and I really miss her when she goes home because Vi's brisk, no-nonsense personality being such, she is able to bully/frogmarch mom to get a break and always gruffly mollycoddles us. She spoils us to the extent that I feel bad that our roles are reversed - she is my kid sister taking care of her big sister, me. Yet, it's so nice to be taken care of and I love that she's such a breath of fresh air in all this. Her strength is so vast, so unflinchingly loyal and so steadfast that I always feel comforted and safe when she's around and I'm sure mom feels the same. You reading this my ONLY sister?? :-)

With this whole episode, I guess I learned that God does not work in meaningless ways. Of course not. Despite the bad, there are always slivers of good mixed in there. We just got to find them, even though it may seem like we are searching for needles in a haystack, and then be thankful when we do.

Monday, October 26, 2009

So MOH has once again come out to say that there is no connection between autism and vaccines. Obviously whatever has been said before might not really be convincing to parents who believe otherwise.

Serendipity strikes my life yet again.

1) A letter from the school about Owain's orientation requested the following items - a vaccination cert (which I do not have), the BCG vaccination card (which I also do not have and did not know they even issued one these days!) and finally, his health booklet (of which his listed vaccinations to date number only ONE!)

2) Prevnar has officially been included in the childhood immunisations schedule for Singapore. To make it 'easier' for parents to vaccinate their children, parents can use their Baby Bonus and Medisave. Looks like MOH finally caved in to Big Pharma - they had previously stood firm on not including it into the schedule citing the low incidence of cases here, and low mortality rate thanks to our efficient healthcare and high hygiene/sanitation levels. So between then and now, what has really changed? In my opinion, nothing really. Big Pharma just got more effective at lobbying. Newspaper articles citing doctor's comments also do not impress me. They are still singing the same tune "more convenient for parents to vaccinate babies during well-baby checks" etc.

Again, no one seems to be addressing, or scrutinising the safety issue.

In Saturday's edition of ST, there was an article decrying the use of animal cells in treatments for humans. The writer deplored the use of animal cells, basically saying that this is unproven science, warning about the risk of exo-viruses which could exist in these animal cells and then potentially alter the very DNA in our system. And so on it went. I just want to know why there is such a hue and cry when animal cells have been used to culture vaccines and these are then injected into the immature immune systems of young babies? Bovine cells, sheep cells, simian cells have all been used at one point or another. SV40, identified from cultures of rhesus monkey cells was found to have contaminated one version of the polio vaccine. I won't go into the details of the SV40 debacle, just google it. But the point is, animal cells have been used for decades in vaccines. There are and have been no long term studies to demonstrate safety at all. If we're making a big noise about sheep cells injected for someone's vanity, I'd like to ask why no one is questioning the use of animal cells in vaccine cultures?

So anyway, the interesting events continue to unfold. A letter to the ST Forum recently asks a few pertinent questions, namely:

1) how much adjuvants are given to children in the form of aluminium and mercury salts in vaccines, besides preservatives, over a two-year period, under the Ministry of Health (MOH) childhood immunisation programme. Scientists have shown that aluminium and mercury are foreign to our biological system and do more harm than good.

2) Does MOH have a register of all complications related to childhood vaccines given in Singapore?

3) In a 2007 clinical study of 300 babies aged between nine and 12 months at five SingHealth polyclinics, what was the adverse complication rate and the severity, in terms of morbidity and mortality? Are these babies followed up long-term and for how long?

All great points and I'm glad someone is asking. But behold the official reply:

"...vaccines used here have been approved by the Health Sciences Authority and are deemed safe for the intended use by the general population. Side effects are usually mild, like a sore arm or a slight fever. Serious allergic reactions are very rare.

As for Mr Tan's concerns about autism and vaccination, there is strong scientific evidence to show that there is no link between vaccines and autism. This view is shared by the health authorities in the United States, Britain and the World Health Organisation. Independent reviews by the Cochrane Collaboration and the US Institute of Medicine have also come to the same conclusion."

Okay first, no one said anything about linking with autism. Methinks the official version doth protest too much. Second, the official reply does not answer any of the questions. At all. I too, would like to know - are there records and stats kept of children who have been diagnosed with some form of learning disorder over the years? This includes autism as well as other disorders. Does anyone track if the rise of these disorders are in tandem with the rise in the number of vaccines?

Not as far as I know.

I don't know if vaccines cause learning disorders or autism. I DO believe that these are on the rise. And if they are, perhaps something ought to be done to find out why. Rather than just brushing off the concerns of parents over vaccines, I think authorities worldwide ought to be trying to find out exactly why or what is really causing this increase. That would probably do much more in allaying fears instead of just the reflexive reply that vaccines are 'safe'. Show me how they are and I might be willing to believe you. But until then, you cannot blame parents for being sceptical. After all, when push comes to shove and a child develops a learning disorder, it is the parents who bear the burden and the grief. Not governments and not Big Pharma.

Monday, October 19, 2009

Update on dad's condition.

Over the last weekend, several things happened. First, the doctors have determined that dad's ascites is a case of pancreatic ascites - a rare complication of pancreatitis. What this means is that the pseudocyst the doctors have been hoping would mature, has erupted and pancreatic fluid is now leaked into the peritoneal cavity. Hence the swelling. The second Coop loop placed beneath his umbilicus has been draining very little water but whatever is coming out looks dark brown - muddy water. In contrast, the other Coop loop in his side is draining clear yellow fluid - normal ascites.

A test of the muddy waters show high levels of pancreatic enzymes - hence the conclusion that this is pancreatic ascites. To rest the gut and avoid stimulating further release of the pancreatic enzymes, dad is now put on TPN - Total Parenteral Nutrition. Basically this means he does not get to eat or drink anything orally. A special team of nurses and doctors will put together a unique formulation of nutrients (amino acids, lipids, vitamins, minerals etc) that will be tailored to his daily requirements and this will go in via the PICC line. Meanwhile, he will continue with strong antibiotics which we hope will prevent infection from setting in. He will also be watched for any signs of a fever.

If there are signs of infection, surgery will look very likely. The hope is that the TPN will bulk dad up and give him the reserves he needs to come out of surgery strongly.

With the TPN in place over the past two days, we have noted that dad looks stronger these days and he is trying very hard to co-operate eg sitting out in the chair for long periods etc. In the past dad was so frail that four people were needed to get him off the bed and settled into the chair. Now, he only needs the help of one nurse since he is strong enough to stand momentarily by himself. So we are happy that the TPN seems to be working.

We get good days and we get bad days. On Sat when I was with him, he threw up a copious amount of brown/yellow fluid - water very likely, since I was giving him ice cubes before that. Looked very much like the Merlion to me! Okay, very ugh factor but it went all over my hand, his pjs, the bed etc. Very icky. The nurse had to change everything. Hopefully the vomiting would be an isolated one-off incident. We were worried that it was a sign that his gut was not doing well.

Gillian went to see him on Thurs after her exams and mom said he had such a big broad grin on his face when he saw her that mom went all teary. Gill thanked him for the handphone he bought her. He had bought it for her the day before he was first admitted and so never had the chance to give it to her. So mum thought it best to give the phone to her so that she could still thank dad while he was lucid. Gill was always his favourite and he really spoils her rotten sometimes, so it was understandable that he was so happy to see her.

With Gillian eliciting such a good response from dad, I am toying with the idea of bringing Trin to see him. My only worry is that Trin may jump on his bed, play with his tubes etc!

We take each day as it comes. I am still half-hearted about Japan. But I know KH wants to go. I think my sister has also pretty much pulled out already. Which in a way, frees me to go because I know she will be there for mom and mom will not be alone. But at the same time, I feel bad about not pulling my weight. It was the same the last time we went to Japan. I guess I will have to continue to sleep on it and keep praying for a direction.

Incidentally, I no longer see porridge, Milo and milkshakes in the same way. After taking care of some of dad's meals - blending porridge, mixing the Propass with Milo, giving the Resource etc, I think I can swear off fish porridge and milk shakes for a long long time. I used to like porridge - one of my favourite foods - but these days, ugh... no. It just reminds me too much of dad's diet before the TPN...

Wednesday, October 14, 2009

Thanks everyone for all your thoughts and prayers. It is certainly not easy to see someone you love slowly wasting away.

Last night I was with mom in the hospital and we spoke to the senior consultant treating dad. Dr C was very frank and while he remained optimistic, I think we know just how risky everything is at this point. Everything that can be done medically, is already being done. Right now, dad is being sustained just by drugs alone. But come a day when the drugs no longer work, and according to the doctor, that day is not long in coming, then surgery will have to be considered.

Surgery is the last resort and Dr C was honest in telling us that surgery is "very very hard". The risks for complications and mortality would be very very high then. He is in fact, trying to hold off surgery for as long as he can. Given dad's age, failing condition of his organs etc, it would not be easy to get past.

Dr has said that they will try their best to resolve the ascites in the abdomen but if they can't, then surgery looks increasingly likely. Also, the water in the lungs may require a tube in there to drain.

I said it is hard watching dad be like this. It is ten thousand times harder for mom than it is for me. All this time, I have not really written about how I feel, just logged about his condition and progress. I try to keep things matter-of-fact. But so many weeks on, I think I just need to say a bit about how I feel now. And if this is how I feel, I dare not imagine what mum is going through.

Watching all this happen, I can understand why some people go for euthanasia. I don't condone this but I can understand. If ever I am in such a condition, please, just shoot me already. Just bring me out to an empty field and shoot me in the head. I would hate to go through what dad has gone through. I think he has been incredibly brave to go through all this and part of me feels so bad to let him go through all this. It has crossed my mind, controversially, would it be better to let him go gently or do so many interventions? To what end all these when the situation looks so damn grim? I know that to say this makes me look like a heartless b*tch who would rather stand by and watch her father die. But this is how I feel sometimes. Then, when he has better days, I chastise myself and think oh well, he is not going that soon so why am I being so pessimistic?

When I am with dad alone, sometimes his breathing is so shallow that I have to strain to listen to it. At times, I would actually stop, go near and check if he was still breathing. And terribly so, I pray, please God, if you have to take him, let it not be on my watch. I would not know what to do. But when I talked to mom about it, she said, it is a blessing to be the one to watch the ships sail out. At least he would not go alone.

When I try to talk about all this, sometimes people tell me I am being premature, or I am chastised for not being hopeful or positive. It is not something we like to talk about. So the only way I can get this off my chest is to spill my guts here. It is just the way I feel - sad, angry, frustrated, conflicted, anguished.

Everybody is praying for us to be strong, or praying for dad to pull through. I just want him and us to be at peace again. I just want it all to go away - my bit of denial perhaps. I just wish it all did not happen. That today, dad would pick up Caitlin from home and send her to gym as usual, then head off to Whampoa for his chess games, that we are carrying on with life and looking forward to Japan and so on. Pity that denial does not become fact. Life does not work that way.

What a big cross dad is carrying now. So is mum. They are - we all are - suffering in our own private ways. The path is ever twisting and dimly lit and there are shadows at every turn. I know where this is all going to end. But nevertheless, we just have to walk it together. This is the part of life's journey. Painful and scary though it is, we just have to walk it to the very end.

Tuesday, October 13, 2009

Reading Brain Rules at the moment. I'm still in the early pages but its given me some fascinating insight into how the brain works and the little that we actually do know about it. Very easy to read and digest with very little technical jargon.

Found it interesting, for instance, to read about how everyone's brain is wired differently when it comes to language. We all think there is a specific lobe of the brain that is dedicated to language rules - but there isn't.

The writer gives a fascinating example of a neurologist who was performing open brain surgery on a girl who was still awake but sedated. He would gently touch one part of the exposed brain with an electrode and she would respond - sometimes it could be a sensation she felt or an image that flashed across her consciousness etc. Her responses varied depending on where he touched.

The doctor was literally mapping her brain with tiny bits of white paper, tracing where certain functions are stored before actually going ahead with surgery. Apparently despite the many patients he has worked with like this, he has never really found 2 similar maps where language is found. Everyone stores language in different ways and in different parts of the brain. Which might explain why someone like Trin might be able to have a very good working memory, is able to hear and understand what we say but unable to join the dots and articulate her sentences correctly or coherently as the other average 3 to 4 year olds.

Anyway, I'm still pretty slow with the book since I am also balancing other books eg travel research, comfort reading (eg my trusty James Herriot and Georgette Heyer favourites that I would revisit whenever the right mood hit), non-fiction essays on Japan, cat psychology and other odds and ends.

The writer of Brain Rules has a website which also looks interesting so if you're not inclined to pick up his book, hop over to the website. There are fascinating small snippets of factoids there that you might find interesting.
Dad's not getting any better. In fact, he is getting worse. Slowly, day by day, his condition deteriorates.

He has been in the hospital for 6 weeks already? I am not sure. Losing count.

Right now, he is unable to eat well because his abdomen is so badly bloated and because he gets so exhausted just swallowing. His breathing is shallow and laboured. His albumin levels are so low that he has required several transfusions of albumin but they seem to be not very effective. His muscles are wasted from the lack of food and activity since he can only stay in bed and not move. He used to be able to walk from his bed to the door, but he no longer can. The most he can do is sit out in a chair and even then, not for very long.

Because he lacks activity, there seems to be already some fluid accumulated in his lungs. So his breathing is difficult and his lungs seem clogged with phlegm. He can't eat solids so mum has taken to blending his food but even then, he can't get past more than a couple of spoonfuls. To get enough protein in him, he is now drinking a liquid diet of protein drinks and diabetic drinks.

To relieve his badly distended belly, they have resorted to putting a permanent 'tap', as in a catheter to drain the fluids. Disappointingly, not much has come out. In some patients, as much as 5 to 10 litres may be drained but in dad's case, it was only about 100ml! They are now going to 'tap' the left side and hopefully more fluid will come out. He is already on furosemide and spirolactone to help get the water out but this does not seem to be working.

Sadly, dad has also lapsed into some form of disorientation and confusion. He seems to stare fixedly at a point in the ceiling sometimes and he talks about weird, irrelevant things. He seems a bit delusional at times. We don't know why but think that maybe its due to the long hospital stay. Just yesterday he was talking about "magnetic prawns" and how expensive they are at $70 a kilo and he was also going on about "the red flower and the white flower bending to each other... and when they touch, they will be very powerful"!! sigh. Don't know whether to laugh or cry.

All this has been very very hard on my mother. She goes to see him everyday, twice a day. All this travelling, to-ing and fro-ing has been very tiring for her. To see him slowly deteriorate is also painful. These days she looks very drawn and tired and there is a pinched look about her face that was not there previously.

I've called MAS and asked about how we can go about recouping cost of the tickets if we had to postpone or cancel. It does not look good with dad these days and I would not rule out anything happening at this point. I don't want to leave my mom alone here to cope as well. If dad does pass away, I will drag her off to Japan for a change of scene. But if dad is still very sick, how can I leave her here to manage alone?

So while I would love to go to Japan, it might not be possible at this time...