Most people just go and watch fireworks

The end of 2011 had us celebrating my MIL’s 70th at yum cha. It was particularly special as 2011 saw her face-off the big C. It scared the baby cheeses out of all of us so we can only imagine how she felt. She dealt with the news, the lumpectomy, the chemo, the radiography and everything that goes with all of that with such strength and honesty it was, quite frankly, inspirational.

But you know how us allconsuming types can’t stand anyone else being in the limelight so the night before had me and and Oscar saying hi to everyone at Mona Vale Hospital’s Emergency department, if by hello you mean Oscar violently spewing half digested SAOs, vegemite and butter into one of those spew bags with the annoyingly narrow openings.

Here’s a tip – want to bypass the full emergency waiting room? Violently vomit just as the triage nurse walks by. Gets you seen to toot sweet.

His headache, high temperature, occasional chuck and weird pain in his left groin left the doc baffled and off we went home because ‘sometimes you just have to let these things manifest to see what’s really going on’. Like ebola and stuff.

The next morning (MIL’s b’day) I had a hairdressing appointment at 9 and got Oscar into our GP at 9. So Chef was on Oscar duty (priorities people). By then ‘it’ had manifested into a red patch on his ankle which ‘could be cellulitis’ so blood tests were needed. Anyone experienced blood tests with a 13-year-old intellectually-disabled teenager who thinks a band-aid means your digit/limb is either about to fall off or death is imminent? Good times!

With Oscar dosed up on pain meds we all ventured to yum cha at Manly which involved me, on arrival, saying ‘does anyone else smell wee?’ It doesn’t get much classier than taking me out in public.

On trying to raise this delicate matter with the staff they all nodded immediately with a ‘ahh yes, the smell’. WHAT THE HELL – the restaurant KNOWS that corner smells like piss (right next to Manly Wharf Bar, need I say more? Probably.) but will sit the big group of skippys there in the hope we won’t notice it’s like sitting in a urinal for dumplings?

What followed was a whole fiasco to open the bi-fold doors which then created the effect of us all sitting in a wind tunnel (visual: yum cha dumpling wrappers flying off into the faces of those on the far side of the table as those on the other side picked one up off the lazy susan) and much mirth at this carnival of ludicrazy.

This is why I’m not allowed out.

Anyway the day progressed up to Chef’s parents place and in doing so Oscar’s ankle started it’s own celebration of going from a red patch to a swollen red patch to an ankle the size of three and the redness moving up his leg. All while waiting for the blood results but let’s be honest, none of us wanted to miss out on the rocky road I’d made, birthday cake or the Boxing Day Test Match.

Our GP – aka The Legend – rang at 4 saying he only had preliminary results but he was ‘deeply concerned’ and thought hospital was still on the cards for IV antibiotics. At 8 that night he sent me a text saying full results were in and hospital was now the only option.

 

This story’s getting quite long isn’t it.

 

Long story (already mostly told) now vastly abbreviated (because I’m getting bored) we were in hospital for five days with Oscar on IV antibiotics.

Five days of Chef’s 10 days off.

Four days later I was moving the guinea pig cage and did my back. By ‘did my back’ I mean completely incapacitated and in too much pain to even writhe .

But having been raised by my mother I felt bad for making a fuss and being of no use to anyone and even though the myriad drugs I was throwing into my mouth (which I kept updating Chef on for fear I fell into a Heath Ledgeresque coma and thus required emergency medical attention)  were doing NOTHING, still the thought going to the hospital for back pain that was so extreme I had to stand over the toilet and do man-wees because sitting was not-an-option just seemed silly and melodramatic.

Two days later we were trying to get me out to the car to go to the physio when it became – ironically for all – painfully obvious the physio would be able to do nothing and I really needed to go to hospital.

I have no idea what mum did when she raced into the emergency department but it saw two staff and a wheelchair come out to greet me (five star service! Arrange champagne and a turn down service stat!) AND straight in to a bed.

I tell you, this family is the valedictorian of bypassing waiting in emergency departments.

Two panadeine forte, an injection of an anti-inflammatory, a beautiful nurse called Felicity and a hot Canadian doctor later I could get up and sit.on.the.toilet for a wee.

It’s now a week later and I’m still lying in bed with a heat pack on my back and while I was down to just taking neurofen and panadol a night from hell with Grover had me taking some panadeine forte this morning as it was seizing right back up.

And that, people, is how you ring in a new year.

 

ONWARD!

 

 

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.