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!

Then again… maybe not!

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I finished a recent post talking about the degree of difficulty with Samuel’s current condition by saying that Samuel always has his way, and was just as likely to turn around pick up and look at us like “whats all the fuss, let’s go home” (and do this all again some other time).

One way road sign

 

I would like to be able to say that my opening remarks in this post are 100% true, but  that is not the case. Samuel has not fully picked up, as mentioned in earlier posts things have gone slow and steady  and we have had to continue dealing with the ambiguity of being human in our circumstances.

When we came to Bear Cottage it was under the full impression and expectation that this our journey with Samuel was going to rapidly head in one direction…. However it seems that Samuel decided that the one direction looked like the one in the sign above.

Where does that leave Samuel…

While his pneumonia in hospital was not responding to some of the most powerful antibiotics available, it seems that Samuel has decided the bugs could not have it all their own way and he has managed to fight off the bugs responsible and clear up his lungs. His lungs have sounded very clear.

However his secretions continue to be thicker, he continues to be in a lot more pain, he seems to be having more seizures, his colour is off, he continues to work hard at his breathing intermittently.

The summary is that Samuel has clearly deteriorated, but has hit a bit of a new plateau.

Where does that leave us…..

multiple direction sign

It leaves us not really knowing where we are going or what is going to happen.

Heading for home

After much discussion we have decided that as things are not progressing that we will be leaving Bear Cottage and heading home as a family… yes including Samuel.

The family has essentially been in our state of Limbo for the past ten weeks as things have moved along with Samuel. The girls have been out of school, I have been off work. Heading for home will allow us to get at least some parts of normal back in our lives. How long the new normal will last is another complete unknown.

Feeling like it is new all over again

As a result of Samuel’s deterioration during his stay at Bear Cottage things are completely different in many ways. We have a range of new medications involved to keep him as comfortable as possible, we have changes in the machinery that we use and we have changes in how we have been caring for him.

Jo-ann and I both feel like we are back where we were when we were first heading home from hospital after Samuel’s accident. We are not confident about how we are supposed to do things for Samuel, we are not confident about our ability to manage the changes successfully and we are both very nervous about using the new drugs that are part of his care.

We are also extremely nervous about the prospect that Samuel may pass away at home, although thanks to the Bear Cottage and The NSW Ambulance Service there are plans in place to return us to Bear Cottage if this happens, or if Samuel’s condition begins to rapidly deteriorate further.

Back up

We are grateful that Bear Cottage will continue to be our back up and that the staff are available at the end of the phone to help us talk through any issues in adjusting to Samuel’s care.

Doing it all over again

This has been a difficult period of adjustment. As parents It has taken a heavy emotional toll preparing for Samuel’s death. We have been in a constant state of free-floating anxiety and it has been difficult to try to prepare the girls for the fact that we were not going to be taking Samuel home with us at the end of our time at Bear Cottage…  and then watching things slow down and get to this plateau that means we will be heading home.

It is going to be very difficult knowing that we may have to go through this all over again and that anxiety will continue to ride with us as a background feeling while we wait to see where things go.

Samuel is in charge….

As I said at the start.. Samuel always gets his way and as usual we are in his hands while he determines how long he is going to keep going… we haven’t figured out what it is that he thinks he still has to do, but there must be something……

Thanks

Thank you to everyone who has been in touch with us, has asked about Samuel and the family and have sent their love and support. Your continued support means a lot to us.. we will keep you up to date as things continue to progress.

 

 

 

 

When things don’t go as expected

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As always Samuel glows

As always Samuel glows

I previously talked about the degree of difficulty we are facing with Samuel, about being in Limbo, about things being slow and steady and about dealing with ambiquity.

Several times along Samuel’s journey things have happened with a sense of urgency, but then……..

Things don’t go as expected…

Right at the start the sense of urgency was about being ready for Samuel to die in intensive care, then when the respirator was disconnected things did not go as expected and he did all the work on his own, setting off what has been a seven-year long journey of discovery.

Then as things progressed a number of problems emerged and lots of discussion occurred around what was to be expected… and things never went as expected. Samuel always decided to things better or worse than expected. If there was a rule book, Samuel was prepared to break the rules and work outside all expectations.

Samuel’s lungs deteriorated, due to the Scoliosis and repeated pneumonia’s and there was a lot of discussion about his capacity to get through the corrective surgery to rod and fuse his spine. There was a very clear expectation that Samuel might not make it through the surgery and/or post surgical period … but he did.

We have had significant periods of deterioration in Samuel’s health and sincerely expected that he would not see his seventh birthday… then his eighth and then his ninth…. but again Samuel has not done what has been expected.

Recent expectations

Samuel clearly deteriorated over the past months with repeated hospitalisation for pneumonia, changes to the bugs, not responding to treatment. I posted about looking for the fire in his eyes, and waiting for the spark.

Samuel was moved to Bear Cottage with an expectation that things would progress rather quickly….

What has happened?

A lot.. but not a lot is the fair summary. As mentioned in earlier posts there are little signs of progress with Samuel. He is looking extremely pale on and off, he is working hard with his breathing on and off, his secretions are getting thicker, he is clearly in more pain more often, he is having increased seizure activity here and there and he is gagging and needing suctioning more often.

We have ceased Samuel’s pressure support, with an expectation that things would move quicker.. but you guessed it, Samuel decided that without pressure support he would keep up the oxygen levels in his blood overnight just fine thank you very much! (They are not as high as they should be all the time, but they are certainly better than what they were in hospital when he was on continuous pressure support.)

It is clear that things are progressing with Samuel but just nowhere near as fast as anyone expected.

Should we expect anything?

After seven years of experience with Samuel (and six weeks here at Bear Cottage) I guess the one thing to expect is that Samuel will not do as expected, never has and probably never will!

It sounds like another cliché, but the only thing we can expect is to expect the unexpected!

We will simply get on with continuing to deal with the fundamental ambiguity of being human, and watching Samuel decide what will happen and when.

Thanks to everyone who is keeping up to date with Samuel’s progress and asking about what is happening. We appreciate all of your care and support.

 

 

 

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.

Slow and steady..

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In the last post I talked about the arrival of that day.

Samuel Four days in…

We have now been at Bear Cottage for four days and it is a slow and steady course we are taking. There have been some changes in Samuel, with increased and thicker secretions, continued lengthy periods of being asleep, some periods of significant increase in his work of breathing, decreased urine output etc. Thankfully so far he appears to be comfortable most of the time and not distressed.

Those expensive machines.. What do they mean now?

We are accustomed to Samuel being hooked up to monitors while hospitalized. Monitors that allow us (along with our observations of how he is going) to be involved in discussions around what actions to take to help make Samuel better, do we add oxygen, do we change machine pressures, do we increase physiotherapy etc etc.

The nature of discussions around those machines and the potential action has changed.. The options now are not about making Samuel “better” but around making sure we keep him comfortable. The conversations also include what value or benefit we obtain having the monitors on Samuel at all. Apart from another indicator that shows us that he is deteriorating what do the numbers mean? The monitors are in some ways now a security blanket for us, without any direct benefit to Samuel. We are slowly adjusting to having the monitors off for various periods throughout the day.

Using the best available monitoring tools…

The most important aspect about providing benefit to Samuel is our observations about what Samuel is doing.. Does he appear comfortable? Is his breathing becoming laboured? Is he appearing more exhausted? When those things emerge what do we do about them? The choices then are about giving him medication to relieve the symptoms, rather than reverse the problem.

We have more choices to make around how long we continue with Samuel’s BiPap.

Seeking quality time

The machines all impede in someway the ability to have quality cuddle time with Samuel, and as every moment we have with Samuel is precious for us as a family it is extremely difficult to make decisions to take away things that have helped us care for him, but we also don’t want those things to interfere with our ability to care for and share as possible with him in these changes circumstances.

That hard place…

The choices we have to make do feel like that cliche of being stuck between a rock and a hard place.. Concerned that withdrawing supports feels like we are hastening his death, and concerned that we don’t want him to be in pain any longer than is absolutely necessary.

things to be grateful for

Thankfully we are surrounded by the team at Bear Cottage, all extensively experienced in helping families in our circumstances, and amazingly compassionate in helping is to walk our way through each of the decisions.

We have also been with other families who have been where we are, or are preparing for where we are.

We could not be in a better place than where we are…