It was the best of weeks, it was the worst of weeks

You know, never in my wildest dreams of during one of my most creative catastrophising episodes would I have pegged that week of hydrotherapy, physiotherapy and general misery as a turning point in my parenting and indeed the final chapter (still playing out mind you) in an episode in our lives I would look back on as one of our best.

I know, it’s like I’ve been watching too much Oprah and am about to show you my inspiration board.

Such was Oscar’s anxiety during that week of first – first standing in six weeks, first weight bearing in that time, first steps, first getting down (and back up) to the ground, first putting bare feet on the ground – and such was my having to be cruel to be kind – no.more.wheelchair., no, we’re walking, keep going – that part of me was mourning the time he was in the wheelchair and being such a legend.

But then I realised that not only did Oscar taking those first steps, even though he was scared and even though his muscles must have been screaming at so rudely being called into action, he did keep going. The word ‘resilient‘ is getting a work out in this house like ‘journey‘ does on any reality TV program.

But something else happened that week. Something wondrous.

The nursing consultant from the chronic pain team visited us. The chronic pain team are part of the pain management unit who visited us post-op and this time around had dropped by because we’d run out of Gabapentin and because it had been that team who had requested it, it was them who had to determine what happened now. Thank goodness I say as when I mentioned it to the registrar she was all, ‘oh we should get him off that as he won’t have any pain issues now’.  

This nurse – Dave – is an absolute legend. Full of information and knowledge and interest in Oscar and what a difference we’ve seen in him since starting the gabapentin. For you see, while that drug was initially designed as an epilepsy medication it is useless as that but incredibly effective in treating neuropathic pain and indeed, anxiety.

Then he gave me a lesson in what neuropathic pain really is – that it is a dysfunction of the central nervous system – but most importantly how much more they see chronic neuropathic pain conditions in kids with cerebral palsy (CP).


Long story short, medical developments such as the use of botox in children with CP means many such kids are not undergoing orthopaedic procedures until adolescence and in turn, the pain clinic at Sydney Childrens Hospital are seeing much higher rates of chronic pain disorders in these kids than in others. Apparently Melbourne’s Children’s Hospital are seeing the same trend.

It makes sense really – here you have children with issues of the brain getting the right messages to parts of the body so messages regarding pain may well be compromised as well.

He spent some time explaining the different pain pathways of the body, about the ascendant and descendant pain messages the body and brain send and how pain and anxiety are very close relatives indeed.

He asked if Oscar had any ‘hot spots’ or areas of the body he didn’t like you touching. Um. HELL YEAH. Anywhere on his head, neck and shoulders, the small of his back, his feet. Hence haircuts being hell, trying to get him moving along by a coaxing hand in the back or a gentle (or firm) push results in a meltdown of epic proportions and the putting on of shoes always being a nightmare.

Oscar’s teariness. His anxiety, His total over-reactions to non-painful situations as paralysing pain.

All of it, ALL OF IT, ties back into this faulty pain identifying and resolving system.

I can not find the words to express how liberating this information has been. The aspects of Oscar’s personality that we find the most difficult, the most debilitating to him and the most disruptive to us as a family are not something we just have to live with. To bear.

It can be managed. We can teach him strategies to minimise it. We can use strategies to off-set it. It does not have to be how it has been.

My mothering of this child has been completely re-energised.

At the moment we are – obviously – focused on getting through the rehabilitative phase of his surgery. The Gabapentin goes a long way to helping minimise his neuropathic pain in his feet and his anxiety about the road ahead. We are using phraseology and approaches that are less, ‘come on Oscar’ and more ‘tell me how it feels’ or ‘you tell that brain it is OK’.

Down the track there will be psychologists and exploring other ways to help Oscar liberate himself from the debilitating grip chronic pain can hold over his life. The pain specialist and nurse both know our paediatrician well and have already made contact with him to keep him in the loop with what their thoughts are about Oscar and the way forward.

So you see? There were tears and tantrums. There was me being the enemy and that he hated me and that he was going to run away (I kid you not, this kid’s language has come on LEAPS and BOUNDS. Even if it is to tell me he hates me and is going to run away). There was me forcing him to walk, talking tough while inside my heart was breaking, coaching him along.

But there was Oscar seeing what he could do under the most difficult of circumstances.
A family galvinised that we are in this together (Jasper’s kindy teacher told me how on Monday he filled her in on Oscar’s progress, that he was home and that now he can walk when before he couldn’t and all these other things he couldn’t do but now can)
There was me acknowledging my son is capable of so much more than I previously thought.
There are new relationships forged with therapists and medical professionals.
There is a new bond between me and my Oggaboy that had been worn down through years of just wading along trying to make the best of some pretty shitty circumstances.
There is hope.

The best of times indeed.

Onward.

Getting your feet on the floor

Wow, I seem to have totally freaked you all out with those pictures. Freaked you into silence. Or is it punishment for not posting for a whole week? Or am I being period-induced paranoid? Or do you all not read blogs on the weekend?

Anyway…

If Day One didn’t make you faint down dead or throw you a complete wobbly, then Day Two should settle your nerves. I have pictures but they’re on my so-not-an-i-phone and will therefore never see the light of day because getting photos off my phone? Near impossible. Therefore, you are all off the hook!

Day Two involved getting in the pool. Oscar was tres excited about this idea because it involved sitting on a chair that took him (gently) upwards then (ever-so-slowly) around to over the pool then (nice and calmly) down into the water.

This is where his interest and enthusiasm began and ended. Getting into the pool was lovely. Doing anything asked of him in the pool was absolutely out of the question. I mean. Let’s think about this.

1. You’ve had major reconstructive surgery on both your feet.
2. You have not had any weight bearing on your legs for six weeks.
3. You have an impaired neurological pain pathway system*

It was just not going to end well.

To his credit there were some things he would do – some limited kicking AND he did put his feet down. Eventually.

Getting him showered afterwards was horrendous and involved him splashing me and me smacking him back before I even really knew what I was doing. Classy.

From there we were off to orthotics to get his new AFOs (aka superlegs). More tears. (Also, mutual crankiness because with kids there is a range of patterns you can choose from for their AFOs to be made of but because Oscar’s were molded during surgery no-one asked me what they should do so they are just white plastic. Sigh.)

Once we were fitted up with those Oscar was primed for physio.

So yeah. I cried.

I mean, here was this kid and everything he’s been through and what did he do? He (with help from the physios) got up on his feet and walked along the parallel bars with nary a whimper or complaint.

What can I say, I shed a tear. Or 20.

Of course, it didn’t stay that way and it is a week on which I will always look back on as one of our best and one of our worst.

Onward.

The afternoon featured physio and getting

*more on this later

One foot in front of the other. Nice big steps. Keep going!

So dudes,

We go to hospital for four days and we have a new Prime Minister? AND it’s a WOMAN? AND A RED HEAD? And what’s that you say? Our ‘old’ PM gets very emotional and shows more humility and emotion than in the entirety of the last 2 1/2 years? Holy crap people, I turn my attention elsewhere for five minutes…

So while our politicians were having a collective brain fart Oscar and I were partying on down at Sydney Children’s Hospital once more. You know, this time with feeling. Or for those in the cheap seats.

For starters we were in the Care by Parent ward which is basically like a budget motel. Our own room, two single beds, our own shower and toilet and Oscar’s meals taken care of. There is a nurse on duty but that’s just in case someone decided to have an unexpected spew (Oscar, I am so looking at you) so it’s all a bit surreal because you’re in the hospital going to myriad appointments but you’re sort of doing your own thing at the same time. Weird.

On top of that, the ward is also the sleep study unit, so each afternoon all these little moppets arrive and the next thing you know they’re all decked out in their jimmy jams walking around with all these nodes attached to their heads and little backpacks on carrying the monitors and wires. The fact i thought it was all rather cute is a clear indication I have exceeded my time spent at hospital allocation.

Stage one: Removing the casts
I think this picture encompasses what Oscar thought of this process.

Yes, I took photos. Because I am a cold heartless parent more interested in boosting my blog ranking than comforting my child. Deal with.

The primary issue here is the ‘tickle machine‘ which is the saw that cuts through the plaster. I mean, come on. Calling a buzz saw with an engine making the equivalent noise of a leer jet a ‘tickle machine’ does little to comfort a child like Oscar.

It was actually quite impressive that his screaming was louder than the saw. Such a talent that boy of mine. To wail at a pitch high enough and at a volume loud enough you’re quite certain your ears and eyes are going to start bleeding any moment. Think of that noise an impala makes as a lion gores it on the savannah. Times that by eleventy gagillion and you’d be at least in the vicinity of Oscar’s protests.

It was, eventually, all over. And look what we found. Legs!

I’m not sure what I expected but they looked a lot like his legs before the surgery and far less manky. Do be grateful however that my blog is not smellablog for dudes, the odour coming off those babies was enough to make the baby Jesus cry and the grown Jesus contemplate not rising on the third day.

After some more screaming at removing those sticky plasters (something he – nor I – was primed for) we had feet complete with really manky scabs and skin falling off.

Do you spy something in that shot up there? (and my apologies for the squeamish among you but hell, if I had to hold on to my breakfast for this caper I figure I might as well share the whole experience) Something that looks surprisingly like some foam held on to my son’s foot with what suspiciously looks like, like, a button? That strangely craft orientated piece of work is how they secure the tendons after this type of surgery. Over the six weeks the tendons heal/reattach/do whatever the fuck they’re meant to do and then they just snip that button off and voila, it’s all done. Modern medicine. The mind boggles.

So this folks, was Day 1.

Don’t you think a parents bar would be a perfect addition to a hospital?