Homeward bound

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The latest stay at Bear Cottage is drawing to an end….As we pack up, Samuel gets in one last peaceful rest in front of the fishtank.

Homeward Bound

Leaving this time is far more comfortable than at the end of my last stay, after Samuel had decided not yet and going home felt like leaving the hospital for the first time after his accident. This time we continue with the routine established since then.

Heading home, despite the continued challenges that Samuels circumstances bring, is always, always a privilege….

Not everyone has the privilege

Our stay has been a reminder that the beauty of Bear Cottage comes with a very important purpose. During our stay a couple of families have been in the same position as we were earlier in the year.

Like us one family has had a temporary reprieve and has headed home after a six week stay.

Sadly the other family has not and their beautiful little girl died.

I am grateful that the family had access to a place like Bear Cottage to support them, and I hope that the support makes this time as peaceful as it can possibly be for them now and into the future without their child.

Hug them while you have them

Take all those kids that you have in your lives, show them you love, hug them… They may not be here for long..

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

 

 

Rush hour

Welcome to part two of observations about the things that have been observed during years of coming and going from a children’s hospital, part one was on watching and learning

 

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The corridors and rooms of the children’s hospital are like the highways and byways.
There is peak hour, bottlenecks, tow trucks and everything else you would expect.

When is Peak Hour?

Well that depends… there’s peak hour when you would expect it… that 9am start causes chaos in the car park,the corridors become jammed with people navigating their way to the various clinic appointments in the different parts of the hospital. There is the usual stream of high volume traffic throughout the day and then the afternoon peak and then…… there is the corridors that look like ghost towns in the middle of the night.

Speedsters and bombs

The corridor traffic is just like the road traffic.There are the zippy little speedsters.. able-bodied people who are in a hurry to get where they have to be, and they duck and weave in and out of the other traffic. There are the beaten up bombs… wheelchairs that their owners have outgrown and look like they are held together with tape and wire (WHY kids need to get to this point with their equipment is a WHOLE other issue that I will address sometime later in another post). There are the one’s doing 40 km/hr when everyone is trying to 60… but that is because they are little kids trying to navigate around with a big pole and lots of pumps and lines and wires attached.. so there is no honking at them, or “road rage” to get them to speed up.

Trucks and tow trucks

Then there are the semi-trailers and/or other assorted trucks…. the beds being moved around by the tow trucks (the porters who are always on the go.. and who are generally characters like Joe.. maybe I’ll write a post about him?), as they move kids to or from surgery to wards, or to or from wards to places like x-ray, or as has been the case too often in my families experience to or from the Intensive Care Unit. The other type of trucks are parents coming in with arm loads of bags.. you know these are the families of kids who are coming for a long stay… generally frequent flyers. Or the parents leaving with that same load of bags.. the long stay is over. The other overloaded parents are the ones leaving with a bag loads of stuffed toys, cards, flowers/balloons etc These are generally the parents of kids who are experiencing their first hospital stay. I look at them and hope that this stay hasn’t been the first of many and that they are lucky enough that this is their first and only major stay… but I know for too many of them that is not the case.

The afternoon peak

Peak hour is different in different parts of the hospital. The PM peak hour is a bit like the usual one on the road… a mass exodus of people leaving the clinics, the road outside becomes clogged. At this point the traffic in the hospital shifts as family and friends all come visiting, the corridors and alcoves become quite noisy and all of the traffic is headed into or out of the wards. Like the peak hour on the roads this one lasts for a couple of hours and then fades away.

The fading of this peak, coincides with the start of the peak in the emergency department. The emergency department has a steady stream of kids coming and going throughout the day, but when evening hits the waiting area in the emergency department begins to burst at the seams. As parents have returned home discussed little Johnnies high temp, and cough, etc etc and they make a decision that little johnny is really very sick and needs some attention. Thankfully the vast majority of these little johnny’s have things that are easily treated with bit of panadol and making sure they get fluids in with gastrolite drinks or iceblocks… things that could have been dealt with by a local
GP and avoided the wait of hours in the Emergency Department waiting room…

This burst of activity for little things that could have been dealt with away from the hospital really gets up a lot of people’s noses. I take a different view.. for most of the parents you see there it is probably the first time their child has been sick to the point of creating concern, and like with the “semi-trailer” parents, I hope that it is their first and only experience of the hospital.

Ghost town….

Once you get past a certain time in the hospital.. in my experience generally around midnight / 1 am the hospital becomes eerily quiet.
Quiet except for the hum of breathing machines, feed pumps and other assorted machines keeping kids going. As a parent who is unable to
sleep walking the corridors after this time, like in the picture for this post, the corridors are long, quiet and the place can feel like
a ghost town.

More observations to come in part three….

 

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…..

dance of social convention

Start the dance music….

Hi how are you?…. asked the person at the checkout, asked the person at the next store, and the one after that.

It’s the same question that you and I get asked countless times every day….

Will you take the lead?

How do you reply?

Today …. I felt like replying….. “Don’t beeeep ask, you are NOT really interested, and if I told you I feel like beeeeep and feel like I want to go on a rampage, you’d recoil at a million mile an hour and be calling for security and the police”….. but what did I say ” Good thanks, you?”

This dance of social convention goes on, day in day out……

Who really wants to dance anyway?

The truth is very few people really mean it when they ask, and very few people stop to think about what might REALLY be happening for the person who they asked.

Did they stop to consider:

They have a child in serious condition in hospital,

they have just come from treatment for a serious illness,

their partner has left them,

they have just come from the funeral of their best friend…… or a myriad of other possible scenarios.

Stop the music….

Let’s do something different…. let’s change the tune.

Let’s try a new question like…..

Now you can take the lead

A question like……… that’s your choice, but if you are going to do a social dance how about you choose

a) a question about which you would really be interested

b) a question that doesn’t make the other person feel compelled to give a glib answer