Sunday, 27 May 2012

Faith, Hope and Rory - Plumbing Part Deux

I thought I was pretty shock-proof at this stage. I thought the Irish health system had thrown all its dirty tricks at me: like when they sent Boy Wonder to a speech therapist who was considered a threat to public safety in California but kosher to work with kids in Ireland, or like the time a local HSE manager wrote to inform me of how much my son had cost her, or that whole ridiculous palaver over the shoes. Experiences like these tend to mark a person, you build up a certain amount of scar tissue leaving indelible reminders of battles waged, won and lost. While I no longer had faith, I was still in possession of some modicum of hope and I had prided myself in being fairly ready for any sucker punches that would blindside any novice. Big mistake.

It all started, innocently enough, with a letter from the UK surgeon, detailing the rarity of Boy Wonder's anatomy (see - it's not just his mammy who thinks he's special) and how that rarity coupled with the small population in our country would make it unlikely that the specialised surgical skill set here would be doing enough of this type of work to give our Boy Wonder the best chance at continence. So far so inoffensive and indeed you would be forgiven for thinking that form signing to move the surgical care to the UK could be deemed a mere formality.

No way José! The first tactic was to ignore the letter - for a whole month they ran around Crumlin hospital with their fingers in their ears shouting 'la la la can't hear you' whenever the issue was raised. Boy Wonder's re-admission to hospital last week with a dangerous creatinine level forced the situation to a head.  His condition was moving from chronic to acute; action had to be taken. The nephrology team in Temple St. called a meeting to finalise the paper work for the E112 application which would get us on a plane to London as soon as possible, except it didn't work out like that.

The dragons huffed and puffed and threatened to blow my house down. There was no way a surgeon was going to sign a form to say he couldn't do a rare procedure. A 'work-around' fudge solution to filling out the form was suggested that had more loopholes than your average kitchen sieve. I naturally refused to be party to any application that didn't give my son the best chance. Eventually common sense and very scary blood results prevailed and a wording was found that would allow the egos to land, but it did leave me wondering how the Hippocratic Oath and the best interests of the child had been completely jettisoned in this cesspit of political posturing.

I've had a week to process what happened and to be honest I'm none the wiser. The scar tissues of past battles have just split right open and the wounds are weeping uncontrollably. I have medicated myself with industrial quantities of carbohydrates and wine, my usual go-to solutions in such cases, it has taken higher doses but it seems to be settling.

Now all I have to do is steel myself to leave the state to have a whole new team in a different hospital carry out surgery on my son.

'Simples' she says reaching for yet another slice of cake and a robust Rioja!



Irish Celt said...

Be the whole day Ann - you'll be a superwarriorwoman by the time your done with them boyos. "The dragons huffed and puffed and threatened to blow my house down. There was no way a surgeon was going to sign a form to say he couldn't do a rare procedure." Got it in one when you wrote about the egos landing. Those consultants are so up their own derrieres they haven't a clue the effect they have on people. With strong women like you they hopefully will begin to see the light. Such a shame that you and Rory and the family have to go through such sh*te in your struggle to keep Rory well. Send you a big hug and lots of respect and love
Anne below in Miltown Malbay!

Eilis Nic Dhonncha said...

Just came across your blog accidentally and have read a lot of it. I am overwhelmed by your strength and tenacity in the face of such cruel bureacracy. I have been moved to tears of anger several times reading through the posts. I have a passing acquaintance with the Early Childhood services as I teach the junior class in a special school. I have been unimpressed (with one notable exception - a wonderful committed OT - she's new...) but I hadn't fully appreciated how horrendous that all is on the parents of the kids I teach. I'll see them in a new light from now on. I hope you continue to find the strength to fight the unfortunately necessary fight. Your boy sounds like a wonderful riot of mischief (my 1 year old has yet to discover the chimney - eek!) and is lucky to have such strong parents and sister to look after him. Best wishes, Eilis (once upon a time Glenard Ave)

AnnB said...

Ah Anne Thanks! Feeling the love wafting up the coast from Miltown - hope to see you over the summer x

Eilis - how lovely to hear from you and thanks so much for your kind comments. The services are just all wrong - they serve neither the kids nor those who have to work with them. Change will be tough as I see young idealist staff being gradually ground down by the system. All we can do is keep shouting!
Hope all is well with you and your family

Cheers to you both Ann

Steph said...


I'm very late to this.

That was an extremely powerful post. I hope it helped to get it off your chest and 'out there' for others to digest. I'm full of admiration for your clear thinking and use of black humour to deal with all the sh*te thrown at you.

I honestly believe that no matter what challenges lie ahead across the water, it will be plain sailing compared to the stormy passage weathered in Ireland.

Safe journey and I'll be cheering for you all the way!

Steph x

AnnB said...

Ah thanks Steph - great to see you back on line! I'm hoping to chart calmer waters in the UK but also don't want to be lulled into another storm so keeping an open mind - just to cover all bases! Hopefully we'll get a date soon - the waiting is tough at times.

Keep up the cheering though we need it! xx Ann