Tag Archives: reflection

When your world shrinks….

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Back to Bear Cottage…

After all the difficulties with Samuel he has been home for two weeks. Samuel and Jo-ann have returned to Bear Cottage… but that is not a worry or cause for concern.. it’s planned…. Jo-ann will be a little spoiled as Bear Cottage holds their mother’s day camp” giving some pampering to her and some other extremely deserving mums.

The return to Bear Cottage will actually act a bit of a circuit breaker for all of us.

Jo-ann gets pampered, Samuel gets some more care and attention from the lovely staff (and we get a bit of a progress check about Samuel from the staff, they are more likely to see any significant changes in Samuel, having had a couple of weeks break since they last saw him).

The girls are at home with me…  back to school for them both and a bit of pressure off for them around home too.

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What has happened with Samuel at home?

Not all smooth sailing and things still don’t go as expected.

Some days have been horrendous, where it has been almost impossible to keep him comfortable no matter what drugs we are able to give him and other days he has simply slept his way through the day without a noise.

A worrying development was having Taylor home from school, completely wiped out by a bad head cold… which spread to Tanja and then having both girls home from school. It was inevitable that Samuel would come down with it.

Samuel’s secretions started to thicken up and go a bit off colour, he has needed a lot of suctioning and all of this started to trigger a large dose of worry for Jo-ann and I.. what would it mean for him?

We don’t really know. He continues to do weird things.. one minute his skin feels like it is burning,the next it feels like an ice-cube, but his core temperature has been fine. One minute he is breathing comfortably, the next he is breathing fast and hard.. but his lungs have still sounded mostly clear.

Reflecting on a shrinking world…

The last few days have provided an opportunity to think about what has happened. I realised that what has happened, for me at least, is that my world has shrunk…

Sometimes it is absolutely necessary for your world to shrink and  to become extremely task focused, because what is in front of you is an emergency (even though that “task” can be huge and have lots of active parts and layers to it that all need attention, and are all priorities that must be juggled … like managing a large fire ;-)  )

Mt Druitt Factory Fire - 2- 28 jan 2011

When managing a large fire, I don’t concern myself with what paperwork is still sitting on my office desk waiting for some attention…but what needs to be done here and now to have the best possible impact on the situation.

However, being back at work for a few shifts, and attending to a few things at work that would not normally be part of my responsibilities really drew my attention to the fact that my focus has been really narrowed (and rightfully so) for months now, including my focus at work..  all essentially since Samuel went to hospital at christmas time.

Seeing the contrast

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Noticing that my world has shrunk really highlighted the contrast to even the relatively recent past.

Dealing with Samuel and all his problems has been a constant for just over seven years.. sometimes needing periods of intense focus on only him but it has been seven years during which there has been a lot going on and I have done many, many things… but when I really stopped and took notice the contrast between last year and this year was significant.

Last year my world was continuing to expand, there were significant things happening that were growing my circle of attention and concern. Things like applying for, succeeding at obtaining, and then travelling for and writing up my Churchill Fellowship. A process that expanded the range of people who I was in touch with right across the globe. The Churchill Fellowship and a couple of projects happening for the Samuel Morris Foundation were setting up a great potential to significantly affect the numbers of children and families that are affected by non-fatal drowning. (This potential is obviously still there… just delayed)

This year, everything has been focused on Samuel and many other things have been allowed to slip by… I have not been talking to as many people, in fact the circle of contact with people has been incredibly narrow and limited. I have not been thinking about a whole range of issues that would normally concern me in a broad strategic or global perspective.

Of course it is perfectly legitimate and expected that my focus is on Samuel and the family, and I would not want it any other way.. but it was an interesting moment to have my attention drawn to the contrast.

The courage to continue….

I have mentioned before the issue of courage… The current situation continues to be full of uncertainty, and thoughts about where things are heading can still be confusing and there are still so many “what if” scenarios and issues…

However thinking about the contrast between last year and this year brought to mind a relevant quote.. by who other than Sir Winston Churchill (rather apt, seeing as how it
is as a result of his legacy that some of my opportunities to expand were provided)…

“Success is not final, failure is not fatal: It is the courage to continue that counts…”

Samuel keeps showing that courage.. so should we…. adapt and overcome!

That day finally came

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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).

 

 

In Limbo….

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In the last post I talked about the degree of difficulty about some of the decisions that are heading our way in deciding how to care for Samuel.

What is happening with Samuel now ?

Not much has changed since the last post. Samuel’s antibiotics have been changed trying to deal with the mutation in one of the bugs that have colonised his lungs, and they seem to have had a bit of success (depending on how you define success in these circumstances), but the options for antibiotics now are extremely limited.

Samuel has had periods of being awake and relatively alert, however he remains sleepy overall and having continued periods of “desaturation” (decreased oxygen in his blood) despite being on increased pressures on his BiPap. His heart rate has been somewhat erratic, fluctuating up and down, and when he goes to sleep slowing down to rates much slower than we have ever seen. He does not seem to be moving his chest much when he is desaturating and does not seem to moving much air (in other words it looks like the BiPap machine is doing most of the work for him when he is in these periods).

In the past when Samuel has been “on the mend” we have had increasing periods of time with him tolerating being off his BiPap without desaturating, with these periods increasing as the length of his admission has gone along. This time he is not tolerating any time of his machine.

The continuing question….

What does it all mean now?

It really does look like Samuel is getting worn out and tired and that his body may be beginning to give up the fight, but there are still no real answers to what it all means. There are not crystal balls, and even the Doctors, despite acknowledging that things are not looking good and may not get better, keep referring to Samuel’s history of looking grim and then bouncing back.. but they just don’t know.

The only good news is that Samuel does appear to be comfortable and not in a lot pain (or at least not giving us the signals he usually does when he is in pain)

It feels like Limbo…

Being in limbo means being in an intermediate state or place… it’s also a dance/game of seeing how low you go. The game has only two outcomes you bend as far as you can possibly go and pull yourself back up onto your feet… or… you fall over.

At the moment it feels like we are definitely in an intermediate state… and playing the game of limbo.. but our game looks the one in the image above… where we are not only at risk of falling over, but it feels like we are also at risk of bursting into flames!

Where to?

We have choices to make NOW in relation to how much more we do and where we do it. Do we continue to do whatever will be decided at hospital, or do we move into the pediatric hospice environment at the beautiful Bear Cottage, a place that has also done a great job of supporting us as a family since Samuels accident?

While we have been having numerous discussions with our various medical teams.. we have a conversation coming up with our main pediatrician and it really is time to think about a plan.. whatever that means. The reality remains it is all about keeping Samuel comfortable, pain free and to always have one of us present with him.

 

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image credit Steve_W

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!)

Get out of the doorway

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Please get out of the doorway…

Time for an admission…. I hate it when people stop in doorways. Everything is moving along nicely and then someone stops dead at a doorway… looks puzzled, checks their pockets, scratches their head, turns to say something to someone else..or does one of a thousand other things that could be done before or after getting to the door. It frustrates the hell out me of me. There, I admitted it!

A surprising admission

This might come as a surprising admission.. particularly given that I have previously written about how a doorknob can keep you sane. But these two posts really do belong together.

That piece challenged you stop and think every time you put your hand on a doorknob. However the circumstances  causing me the most frustration are not the doorways with doorknobs, but the automatic doorways in public places… so no chance to put in action the specific little zen challenge contained in that doorknob post!

Turning gut reaction into science!!

Then I find that Professor Gabriel Radvansky of the University of Notre Dame (published in the Quarterly Journal of Experimental Psychology) may have provided an answer as to why this phenomenon occurs.

He found that  “Entering or exiting through a doorway serves as an ‘event boundary’ in the mind, which separates episodes of activity and files them away. Recalling the decision or activity that was made in a different room is difficult because it has been compartmentalized.” His study included a series of virtual and real world scenarios testing memory recall differences between crossing a room and exiting a doorway and in every set of scenarios the act of walking through a doorway resulted in the decline in memory performance associated with the task in that scenario.

I wondered…. is this act of stopping at the doorways triggered by a human gut reaction? Do we instinctively know that after crossing a threshold like a doorway that we will forget something. After all there are many examples of things that people do that have subsequently become the focus of psychological experiments… is this just another one?

What is your experience?

Have you experienced that sudden doorway stop… if so in what circumstances? Are you frustrated when other people do it? Does the Professors research ring true in your experience.. do you experience that memory loss of what you did in one room after you pass through a doorway?

If you are like most of the people I’ve already discussed this with then your answers are all likely YES!

Most people have mentioned the experience of having you gotten up to do something, walked into another room and then stared blankly thinking what did I come in here for? What was it that I was going to do?

Then I thought….

You know what… even if it is an instinctive gut reaction that doorknob post is still relevant….and a bit of a tweak might help to counteract this “forgetfulness” associated with moving through doorways.

So it’s time to update the challenge but instead of focusing on every time you put your hand on a doorknob… the challenge is for every time you approach an open doorway between doing tasks! I encourage you to ask yourself the questions like those contained in the doorknob challenge…..questions such as:

What am I feeling now?

Why am I feeling like this?

What am I about to do?

What is my intention on going through this door?

What is the task that I am going to perform on the other side of this doorway?

Who am I going to meet on the other side of the door?

Am I ready to really “meet” with them, and give them my FULL attention?

Are you up to the new doorway Challenge!

Choose a time-frame, whether it is a particular day or a week and every time you approach a doorway do one of these mini meditations….you never know you might find that your forgetfulness begins to disappear, and you begin to enjoy those mini zen like moments of clarity!

I’d be interested to hear what you think, or how you go at trying the doorknob challenge or this doorway challenge.. you can share your thoughts or experiences below.