Degree of difficulty 10.0

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Samuel remains in hospital and the watching and waiting for the spark in his eyes to burst into flame continues.

In a recent status update on Facebook I described the experience being like taking one step forward, three sideways and one back… while adding in a triple somersault in a half pike position.

If that sounds like it is a degree of difficulty of around 9.0 then the thoughts and discussions that we are having have a degree of difficulty of 10.0…..Thinking about issues of death and dying are nothing new on this blog, or indeed new to Samuel’s circumstances. However, with every new twist decisions become more palpable and pressing.

What is happening with Samuel?

It was all looking good, or should I say better. Increased alertness, noise making.. better air entry in both lungs, saturation levels looking ok, blood gas levels ok, and then…..

The temperature spiked, his work of breathing increased.. he went from his nasal Bi-Pap mask back to his full face Bi-Pap mask and his pressures needed to be increased again.. extreme difficulty drawing blood for the necessary tests, blood coagulating very quickly, blood gases being a bit out of whack and continuing problems with his electrolyte levels.. particularly being a bit low on potassium (important for regulating things like the heart rhythm).. and he has less of the life and spark in his eyes again.

Then some results come back and one of the bugs in his lungs has mutated and is becoming increasingly resistant to the antibiotics (which are already in the “last line of defence” category).

What does it all mean?

If only there was a simple answer to that question. What it means is more questions than answers.

I’ve always been interested in the question about what constitutes a good life, but know its time to also contemplate the question about what constitutes a good death?

Where do you look for advice like that?

Our experience with all of Samuel’s doctors and nurses at the Childrens Hospital at Westmead (CHW) has been an overwhelmingly positive one, and they are all doing what they can to sit with us and discuss questions about what is happening to Samuel, what it means and the type of decisions we may have to make.

The World Health Organisation defines palliative care as “the active and total care of the child’s body, mind and spirit, and also involves giving support to the child’s family”. Our teams at CWH really are doing a great job of meeting this definition.. as they have across the years. The conversations are just becoming more intense, more focused and in some ways more specific around treatment decisions.

There are some decisions that we may be forced to make, and there are some that Samuel or circumstances will dictate and/or take out of our hands.

What is a good and natural death?

We already have, and have had for quite a while an “Allow Natural Death” order in place, limiting the scope of treatment that can be implemented in the case that Samuel goes into respiratory or cardiac arrest.

I have read a fair bit around the associated decision making, including reading the “Decision Making at the end of life in infants, children and adolescents” Policy document of the Royal Australasian College of Physicians, so that I can really understand where some of the obligations, rights and responsibilities of our medical teams are coming from.

It sets out principles including Respect for Life, A duty to act in the best interests of the child, and palliative care, Autonomy and Competence and Right to information and choice. It includes discussion about withholding or withdrawing treatment, It even includes a section dealing with Severe Neuorlogical Impairment.. clearly where Samuel fits.

It talks about quality of life….. and how subjective that issue is.. as conditions progress what really is quality of life??

I’ve also read a few other bioehtics articles around end of life decision making.. some of these involve discussion of concepts like “a life worth living” and “a life not worth living” and “determining thresholds”. as harsh as they sound from a “medical professional” point of view all of the concepts used make sense.

BUT WHAT ABOUT….

It doesn’t matter how much sense all the policy documents and academic bioethics papers make.. what about when it is your child??

Being confronted with the REAL questions about what is the plan from here, what will we consider, what wont we consider, when will we make decisions about different aspects of treatment none of those arguments matter.. it is simply gut wrenching and there are no answers.

I referred to courage again in the last couple of posts… but I don’t know what courage looks like here. Yes I’ll whisper to myself that I’ll try again tomorrow, yes tomorrow we will be thinking about these things again.. the answers probably won’t be any clearer.

Right now the issue is about overcoming my own fear about making the right decisions for Samuel. Decisions that will keep him as comfortable as possible, not allow him to be overly distressed and ultimately to try and make sure that he does not die on his own when that time comes (even though that is something we simply can’t control.)

Then again…

Samuel always has his way, and he is just as likely to turn around, pick up and look at as like “whats all the fuss, let’s go home” (and do this all again some other time!)

Welcome to Shitsville… and how to move on!

Welcome to shitsville….

That’s how I ended a comment on another blog….. What? That’s not very polite I hear you say… and you’re right but it needs some context to understand the comment…

The blog post I commented on was an honest assessment of how Single Dad feels about some recent media around a disability related issue… and the feelings it brought up for him.

Now Single Dad NEVER pulls punches..(and did I tell you he hates idiots.. ) in his post he did a great job of explaining the Shit-o-meter… (and I stole the image from his post.. because I happen to like the GAFoM version). He also did a great job of honestly assessing his own ability on the shitometer, and comparing that to others perceptions and abilities on the shitometer scale.

My comment was about all of us being somewhere on the shitometer scale, and sometimes being at multiple points on it at various points in time. You can find the post here (but I warn you, unless you are willing to confront brutal honesty from both Single Dad and those that comment on his blog, most of whom are dealing with profound disabilities of one sort or another.. don’t follow the link.)

How to get out of Shitsville

If you were in Shitsville I’m sure you would be looking for a way out…. the reality for the vast majority of people for whom Single Dad’s post was relevant is that there is NO WAY OUT OF SHITSVILLE and we will always be sitting somewhere on that scale…  but for everyday folk… it really should be about Giving a F… and putting that needle on the GAFoM gauge at the top of the post firmly into the positive zone?

So elsewhere on this blog there are few suggestions  about dealing with problems and making choices, and how to sit with sadness

But it was another post that I read this week that was a great prompt for thinking about how to change the number of your own shitometer.

Irrational questions to ask yourself….

In that post Dan Pink introduced the work of Dr Michael Pantalon PhD (author of Instant Influence: How to get anyone to anything FAST , and Dr Pantalon provided two questions  and some analysis that I think I really useful.. but I’ll adapt them to the circumstances of the shitometer

1. How ready are you change your number on the shitometer, on a scale of 1-10, where 1 means not ready at all and 10 is totally ready?

As per Dr Pantalon’s instructions you MUST give yourself a number.. if your answer really is a 1.. then ask yourself “what would turn it into a 2”.  If you answer yourself honestly.. you have just revealed to yourself what you need to be able to make a change….and what you need to be motivate yourself to do first.

2. If you pick a number that was higher than 2 ask yourself “Why didn’t I pick a lower (yes, lower) number?

By honestly answering question 2 your are asking yourself to defence why your desire to change is the slightest bit important to you, rather than defend your excuses why you won’t do it.. As Dr Pantalon says … The answers lead you to rehearse the positive and intrinsic reasons for doing what you asked yourself which in turn dramatically increases the chances that you will actually get it done…

The book contains plenty of other gems… not put together by your average watch me make a quick buck internet marketing entrepreneur but by Psychological research scientist from Yale School of Medicine, so go buy the book  Instant Influence: How to get anyone to anything FAST to learn some more (and yes that IS an affiliate link, so you if you buy from the link you can help me maintain my coffee habit!)

and… when there really is no way out of Shitsville?

If there REALLY is no way out of Shitsville ….. then I invite you back to my post on sitting with sadness

 

 

Always watching and learning

Samuel in Intensive Care Unit

This post is being written sitting bedside in the Intensive Care Unit at the Childrens Hospital…. It’s the second time we’ve been here this year and our seventh time overall  (read this if you want to know the background to how we got here).

I’ve spent the past three days watching Samuel, watching the numbers on the monitors, asking questions etc etc etc…..

But I’ve also had plenty of time to sit here and think about the experiences of being in and around this hospital and the things that I’ve seen and heard in five and half years of being back and forth.

The things I’ve observed are things that go on…..

from minute to minute

from hour to hour.

day to day

week to week

month to month

year to year……..  I’ll share them as a series of observations, so here goes with part 1.

The soft shoe shuffle

The soft show shuffle goes on, on. It consists of all those soft soled shoes that the nurses wear, constantly coming and going. The tempo of the shuffle tells you a lot about what is happening at any given period of time.

The hurried heavy foot steps when a child’s monitor goes into particular types of alarm, or an emergency button is pushed.

The calm stop start as they accompany a child on a walk through a ward.

The tip toe shuffle as they quietly move about in the middle of a night shift doing their checks.

The Tribal Dance

This is a unique ritual that occurs within the hallowed halls of a teaching hospital. The alpha doctor patrols his or her turf with a sense of confidence and ownership, followed by a tribe of beta’s (the registrars) and pack (the residents). They perform their own version of unique rituals as they come to see a child, depending on what specialty they represent.

It’s an interesting dance routine to follow, especially when you have a child that has quite a few of these tribes involved in their care.

Negotiating the dance can sometimes feel like needing to be an international diplomat, the different tribes are concerned primarily with their “patch” of your child, and sometimes don’t think (or appear not to think) about the implications of their directions on the other tribes and the treatments they have already planned.

The diplomat part comes by coaxing them to make smoke signals to the other tribes… OK smoke signals might be a bit off, you know what I mean EMAIL the modern equivalent of smoke signals, and sometimes having to do some translation between the tribes. [ to be fair the tribes do a bloody great job ]

There is also another big challenge in this tribal dance….. the tribes are pulled apart and re-assembled every three months….so after spending three months becoming educated in a particular specialty.. the beta’s and the pack get to go back to scratch and begin working up a working knowledge of a new specialty area and then…… every year members of the pack become beta’s, some of the beta’s become alphas (or go off to practice elsewhere).

Parent also play a big part in the education for the tribes. Parents of complex kids help out regularly by doing “case studies” with the pack and beta’s as they prepare for progression with the the tribe. Giving them a chance to practice getting a full history and thinking about how they would come up with an overarching treatment plan for your child. Practice for their exams as Pediatricians.

Getting them to remember that the parent they are dealing with is the EXPERT in the child they are seeing is a big part of the education process.. sure they have a six year medical degree and a certain amount of practical experience and they may be the expert in a particular field of medicine… but the parent (and/or the child depending on the condition and age etc) are the EXPERTS in how the disease, illness, infection etc is affecting THIS child.. and again to give them their dues the vast majority of the doctors have learned this by the time they assume a Beta position within the tribes… those that don’t, soon become a nightmare for parents, but thankfully this experience has been rare.

 

More to come in Part 2…..

Whack! Did that make you think?

Whack….

Sometimes something or someone comes along that just whacks you in the head and makes you think differently……

People who whack you in the head..

I’m lucky to have a connection to a guy by the name of Sean D’Souza who himself has that knack, but he also has the knack of finding and pointing to material and/or other people who do the same (there’s an example coming up below)

Things to be whacked in the head about…

You have probably seen a whole lot of things that tell you that the richest x% of people control y% of this or that.

The mere fact that you are reading this post on your computer of your smart phone says something about where your position in that equation, it also says something about where you sit in the energy consumption equation of the human population. All that energy consumption has to have consequences somewhere, and therefore you would have to have been living in a cave if you had missed the ongoing discussion about global warming and if, like me, you are an Australian then you certainly could not have missed the debate about a carbon tax/emissions trading scheme.

Most of the debate has either been around dry academic arguments about the validity of the science of global warming and the need to reduce carbon pollution, or about pure politics associated with selling us the concept or scaring the hell out of us about the economic implications of attempting to do so, but NOBODY in Australian politics or media has cut through and delivered a lesson like a man (who is neither Australian, a politician or journalist) by the name of Hans Rosling.

Prepare to be whacked


 

Nick, Nack, you’ve been Paddy Whacked…

Hans Rosling and his magic washing machine have taken some pretty hefty concepts, whacked us in the head with  a story that is easy to grasp and challenges us to think differently about our energy use, the implications of economic growth and power consumption and by association presented a challenge to think about changing to greener sustainable energy…. WOW all of that in 9 minutes and 16 seconds (including TED’s intro!)

The ability to distill and deliver a message like that is amazing….

If you need someone to help whack you in the head regularly and help you work on getting your messages as good as the one delivered by Hans Rosling you could do a lot worse that connecting up with Sean D’Souza! Sean is a man who works hard helping other people think about presentation skills, marketing, customer focus etc etc and you can find him and his various programs at   psychotactics or keynotenut (please note these are NOT affiliate links but if you connect up with Sean give him a gentle nudge that it was me that sent you his way ;-} )

Why a small shift equals a big change

How often when you set out to change something you don’t like do you try to make a huge change?

Have you considered what making a small change might lead to?

Scientists have been looking at this question, see this article in New Scientist http://bit.ly/9hfZ4M . They argue that a range of very simple shifts in events could have profound outcomes for the evolution of life on earth.

But lets look at it from a different perspective… planning a route (orienteering, flying, walking, sailing) if you set out to go somewhere but you are only 1/2 a degree out on setting your course you could wind up many hundreds of kilometers away from your intended goal at the end of the trip.

So if a small shift can lead to a massive change on a global evolutionary stage, or a change of 1/2 a degree can send you way off on a new track…. what can you achieve by making one small shift in your daily patterns or habits that would set you on a path to a newer/better you?

Let me know in the comments.