So this is Xmas …. But

 

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Missing Samuel’s spontaneous joy…..

So this is Christmas?

So this is Christmas… An opening line to a famous song that you can find below….. and yes I hope it’s a good one, without any fear, and I hope your wars are over……..

But I know that’s not the case for me and it’s not the case for many people.

I’ve written before questioning whether it is really A Merry Xmas and how this season induces a fair bit of Bah Humbug feeling in me.

Carrying the fear..

This whole year has been filled with an undercurrent of fear as my family was given the news that THAT day had finally come for Samuel, and then we dealt with things not going as expected.

We have had to continue dealing with the fundamental ambiquity of being human and every day with Samuel we continue to deal with the quiet, noise and fear. of continuing to care for him.

Capturing the moment.

I love the photo that I have included in this post… it shows the beauty of my little man and the look melts my heart….

But it’s a look that is fleeting, and came at a cost of some pain to Samuel. However it was great to capture this moment… and some beautiful photos of him with his sisters.

The thing I love most about Christmas is the spontaneity and joy of my children…. but I miss that spontaneity and joy in Samuel and this year it is hitting home that I am missing it again.. and knowing that the way he is we may not get to capture the moments like these with him for much longer.

To quote another verse from the song:

And so this is Christmas
For weak and for strong
For rich and the poor ones
The world is so wrong

So even though I will experience the joy of xmas with my family with an undercurrent of fear…. I know that there are still many others far worse off than we are this xmas.

So, yes I still hope that it’s a good one, without any fear … and that your wars are over soon… but if they are not.. then I will be thinking of you too.

The ambiguity of being human

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Three weeks along

It seems like a blink but we have now been at Bear Cottage for three weeks and things continue to be slow and steady. It has been three weeks of continued watching and waiting.

I should know not to expect anything concrete in life.. But when they moved us to Bear Cottage it was with a sense that there really was very little time left with Samuel. However in his usual form Samuel has decided to continue to do things in his own fashion and in his own good time.

What Samuel has given me is a lot more quiet time to reflect on life, to read and to contemplate a wide range of things.

The fundamental ambiguity of being human

Impermanence… it’s an issue that we all have to deal with whether we like it or not. Exploring and becoming comfortable with impermanence is a key part of Buddhist philosophy.

One of the books I have read while sitting alongside Samuel’s bed is “Living Beautifully with Uncertainty and Change” by Pema Chodron.

In it she reminds us that

whether we’re conscious of it or not, the ground is always shifting. Nothing lasts, including us.

She also provides great reminder about the conditions we all experience in life and provides some excellent points on exploring the fact that we are always trying to get solid ground under our feet, always concerning ourselves with pleasure and pain, gain and loss, fame and disgrace, and praise and blame; always moving between the various states.

Sitting and watching Samuel for weeks, and as a family trying to keep things together, calm and purposeful, has been great lesson in the movement between all these states.

How to be of service..

I try to be compassionate. A strong reflection on compassion is always accompanied by the question “how can I be of service”?

In the book Pema Chodron also reminds us

Time after time… We will find that we are not really sure what will help and not hurt

As we have been making decisions for Samuel over the past weeks a constant concern has been about making decisions that won’t hurt him. We have made decisions about removing additional pressure support for Samuel, some slight changes in his medication, getting used to changes in his breathing patterns…. Having to accept things that in the past we would not have accepted.

It’s all an experiment

Pema invites is to live our life as an experiment and;

adopt an attitude of “I’m not sure what will help in this situation, but I am going to experiment and try this”. Sometimes the result will be “Wow, did that ever NOT work”, but if it is we have learnt something, and now we can try something different

Samuel’s colour is not what it usually is, he looks a little blue around the lips and nose in the mornings, he is occasionally working harder with his breathing, he is clearly in pain more often.

We are figuring out what works and what doesn’t. We are watching and waiting still but as always we are being guided by Samuel and it’s clear he is going to decide what will happen and when.

Until them we will continue to deal with the fundamental ambiguity of being human in our situation.

That day finally came

Samuel_headshotUpdating Samuels picture..

In the last post I talked about our circumstances and how they felt like being in Limbo. As a family we have bent and bent.. but in some respects we can bend no more.

I have talked about looking for the fire in Samuel’s eyes, the hope of where there is a spark and the degree of difficulty about some of the questions we knew were coming at some point. As I said in one of the other posts I have had an uneasy feeling throughout Samuel’s admission and in many ways we all knew, at least intellectually, that the day was approaching where some tough decisions would need to be made.

Samuel has dictated that those decisions (or at least the first of them) needed to be made today, knowing it was coming intellectually is still no preparation for the reality and the emotion that hits you when the decisions actually need to be made.

Our incredible teams of doctors

My family will be eternally grateful for the care and guidance that many teams at the Childrens Hospital at Westmead have provided us. Care and guidance that have allowed us to give Samuel the best possible quality of life over the past almost seven years since his accident. That care and guidance continued today with Samuel’s pediatrician taking a big chunk of time to sit with Jo-ann and myself and talk through everything that has happened and to spell out his concerns about the capacity to continue to give Samuel a meaningful quality of life and the very real indicators that Samuel has very little fight left to give, along with his wish to continue to do the right thing by Samuel and us as a family.

I have no doubt that the conversation we had this morning is one of the hardest that a doctor ever has to have, but in his usual fashion Samuel’s main doctor did it in the most caring and respectful way humanly possible.

That conversation was the first a few very tough ones necessary throughout today to beginn to layout the plan to make Samuel’s last days as special as they can possibly be, to make sure that he remains as comfortable as possible and that he is always surrounded by his family and people that love him.

What does the plan look like?

Part of that plan is to stay at the Children’s Hospital at Westmead for the next few days while the first steps and changes to Samuel’s care plan are made, and then to move over to Bear Cottage.

The Bear Cottage team has been involved in helping to look after Samuel and the rest of the family over the past few years. They have  provided us much-needed respite and pampering from time to time. It is a warm, welcoming and incredibly friendly place where we will be surrounded by a team of staff that know Samuel and the family well and with whom we have discussed many things about Samuel over the years. We will also be with other families who are at various stages of the journey we have been on with Samuel. We know that the Bear Cottage team will help us make Samuel’s last days as special as they can possibly be.

Sharing the news

There is no right or easy way to talk to your children about the coming death of their sibling. Jo-ann and I are lucky to have two beautiful compassionate young women who love Samuel unflinchingly and unfailingly. Sharing the ongoing changes with them, and then getting home and sitting down with them both to have a very long chat about Samuel and what the coming days may mean was made as easy as it could be by their maturity beyond their years, and their ability to be open and honest about what they are worried about, what they want for Samuel and for us as a family. Jo-ann and I are incredibly proud parents of three children who inspire us endlessly despite the challenges that they have each faced.

Sharing beyond home

Phone calls to a few, facebook updates, a few twitter messages, the message about Samuel and his circumstances has spread far and wide including to many places around the world. How far and wide this network of people extends is an indicator of the impact that Samuel’s life has already had.

Thank You

We are really thankful for all of the messages of love and support that so many people have already sent us, and continue to send us. They are too numerous to thank individually without taking time away from other important things that we need to focus on. So please take this as our thanks to you for your love and support (of which we are sure we will need plenty of over the coming days/weeks).

 

 

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!)

Where there’s a spark…

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The last post was about looking for the fire in Samuel’s eyes

It has been four days of watching and waiting with Samuel not even opening his eyes.

However, wherever there is a spark there is a chance of fire!

Today Samuel opened his eyes… And as the day has progressed he has kept them open for longer and longer periods, and I can see the spark in his eyes again !!!!!

It’s a feeling of relief to see the spark, even though he still has a way to go and the uneasy feeling isn’t fully gone.

Now I’m watching the spark looking for a raging fire 🙂