One is not the loneliest number

One is the loneliest number

Famous song lyrics would have us believe that one is the loneliest number, but that’s a lie.

The loneliest number is actually a formula:

Lonely = x – 1

Where x is the number of members of your family and minus one represents the child in that family that has died…..

That is the loneliest number.

A number that will always be hollow and resonate with the echo of an absence.

Samuel Morris

Samuel Morris 27Aug03 – 22Feb14

Slow and steady..

20130317-212705.jpg

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…

In Limbo….

 

 

 

1164549860_2f3f6e6a7b

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.

 

somerights20

image credit Steve_W

Degree of difficulty 10.0

>20130305-221819.jpg

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