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!

Cheers,
Ann

Plumbing Pitfalls Can Include Politics and Pit bulls!

Once again I find myself stuck in that no-man's land that stretches between the best interest of my child and the trenches of the HSE troops. Boy Wonder's plumbing issues have been more than well documented here so I'll pick up where I last left off.

The kink in Boy Wonder's tube has caused a steady up-ward crawl of his creatinine levels and an equally steady dilation of his transplanted ureter; hardly an ideal situation for an eight year old with a second-hand kidney. So our renal team in Temple St. figured it was time to involve the Urology team in Crumlin Hospital. Now here's another classic HSE-ism that my logical brain is at a loss to comprehend - why doesn't the national renal centre in Temple St. have a urology department under the same roof? Why do all patients have to schlep across the city to the attend the crumbling circus that is Crumlin Hospital?

Our attempts at getting an appointment were stymied at every turn with a fire breathing dragon who answered our calls in a manner that should only be reserved for cold-calling, PC-virus-scan sales people, who always mange to call as you're just putting the first forkful of dinner to your lips. Now correct me if I'm mistaken here, I can't understand why we represented such an inconvenience to this woman as I imagine the job description of a secretary in a paediatric hospital would include taking calls from parents wishing to make appointments to see specialists.  As our appointments were repeatedly scheduled and then cancelled over the course of ten long months, Boy Wonder's creatinine climbed and his ureter dilated in direct proportion to his mother's rising blood pressure and ire.

We eventually breached the moat and silenced the dragon back in November. Our meeting was as confusing as it was infuriating. We were told that since Boy Wonder's ureter had dilated beyond the point where it was considered safe to plumb into a bladder fashioned from his bowel; the agreed long term surgical plan for our boy was no longer possible. As our only option of continence for our 'wee' man slipped through our fingers, I was naturally proper pissed off! Had we not just spent the last year trying to get to see this man who knew the ureter was dilating and the clock was ticking?

So I did what any mother in this situation would do: I got thick - very thick in fact and demanded a second opinion. Last week, amid dire warnings of even more dire consequences if we proceeded with our legal right to a second opinion, we finally made it inside the doors of the hallowed ground of London's Great Ormond Street Children's Hospital.

Thanks to that consultation, we are now the proud owners of some different options for our boy, but there's a hitch (isn't there always?). We need the dragons and Pit bulls at the gates of Crumlin to tell the HSE grey men in suits that the team in London are right before we can proceed! Now what are the chances of that happening anytime soon?

Answers on a postcard please!

Cheers,
Annb

Ní Féidir Liom - No I Can't

A mixed year is drawing to a close and I can't say I'm sorry - we've had a few battles, with many a triumph mind you, but we're battle weary all the same. 2011 started with a flood, progressed to blocked pipes and rounded off nicely in a dose of pneumonia.

Instead of new year's resolutions I've drawn up, what I like to call my Ní Féidir Liom list. As you may have guessed, I've always been more prone to rant than cant.

Here's a few of my more pressing I-just-can't-and-don't-even-think-of-asking-me rants on the last year:

The Ní Féidir Liom list.

No I can't understand why we as a nation owe money to someone we don't even know - did nobody think to check the signature on the cheque when we signed on the dotted line?

No I can't say I'm surprised that, a year after our last meeting, Enable Ireland still haven't answered our concerns about their breaches of Irish child protection policy. I can say that I'm much relieved that we no longer have to rely on their services for Boy Wonder but I do feel a kind of survivor's guilt for those who still do.

No I can't help being stunned by the kindness of strangers.

No I can't understand the hype surrounding sun-dried tomatoes.

No I can't help but be amazed by the wonderful support and energy we get from teachers and special needs assistants.

No I can't stop smiling every time I watch Boy Wonder singing Karaoke.

No I can't understand why a consultant gets snotty when you respectfully ask for a second medical opinion. I would love an insight on that one!

No I can't wait to get to London's Great Ormond Street Hospital to hear that second opinion.

No I still can't fit into a size 10 jeans - wise up love it's never going to happen!

No I can't thank people enough for their support.

No I can't but hope that 2012 brings us all more good fortune.

Thanks for the company and Happy New Year to you all.

Cheers,

Annb

Are We There Yet?

It's been a busy few months since I last posted - we've been chasing our tails so much I don't quite know where to start. We're not there yet but we're darn close!

Well firstly, Jess got back from her camp at Barretstown with a nasty chest infection which she then passed on to Rory during our holiday in Connemara. That lingered with him for a while and then his gut started to act up, then it settled down again until suddenly all hell broke loose and we ended up back in Temple Street with pneumonia!

Needless to say the return to school has been disjointed and with that our whole household routine has been even more chaotic than usual. The other kidney and myself are now so wrecked that we are fantasizing about a week in hospital for ourselves just so we can catch up on sleep! We were so out of practice with the whole hospital thing - isn't crazy how quickly you forget? We morphed back into a pair of lightweight first-timers not able to plan even the most simple logistical task of organising after-school activities - I just got the last place in the swimming class by the skin of my teeth and I suspect the woman took pity on me as I was close to tears at that stage, or maybe she feared I might turn feral and make a lunge for her!

Today we're back on track, we've dried our eyes and blown our noses. Boy Wonder did his first full day at school yesterday and then promptly slept for three hours on the couch! We all got into to bed at 8pm and today I feel like I could run the world!

I've been working on a project all summer and it's finally ready for the world; all of you iPhone/iPad users out there check out my new app: http://sutromedia.com/apps/Ireland_Are_We_There_Yet

It's a travel guide to Ireland for parents travelling with kids: jam-packed with fun ideas of things to do and visit. It was a labour of love and written from heart but with a large chunk of experience of the survival tactics necessary for long journeys with cars full of the deafening chorus of 'Are we there yet?' emanating from the back seat. I hope you enjoy using it as much as I've enjoyed writing it.

Cheers,

Ann

Roots and Wings

Yesterday Boy Wonder and I dropped Jess to Barretstown. It was a glorious day, the sun danced through the canopy of trees as we wound our way round the country lanes to Ballymore Eustace, Co. Kildare. The tingle of anticipation for a ten day sibling camp had infected the entire car, we were like a heard of deer on full alert, scanning each gap in the hedges for the first delicious view of the castle gates. I couldn't help noticing that this time she was even more excited at the prospect of going back. A mixture of age and experience perhaps, but I also think the magic of Barretstown had a role to play.

Their philosophy is simple: get kids together, give them loads of love and encouragement then throw in some amazing activities and sit back and watch them blossom. By taking these kids away from the stress of living with a sick brother or sister, this camp allows them to take risks, to take their feet off the brakes and just let loose.

I once read that a parent's job was to provide roots and wings for their child. Childhood illness has uprooted us and clipped our wings at times. We work at it, but it's not always easy. Barretstown allows me to sub-contract some of my parental responsibilities, at least in the short term, until I regain my nerve. These camps have reinstated the devil-may-care licence of her childhood.

Thank you Paul Newman, and your Barretstown Gang, I hope you can see her standing tall, unfurling those powerful wings to their full life-enhancing childhood span: un-clipped and uninhibited.

Cheers,

Ann

Organ Donor Awareness Week 2nd - 9th April 2011

It's that time of year again when the donor community fight to bring the issue of organ donation to the top of the busy news and media agenda. You may even have read some very moving personal stories in the Sunday newspapers yesterday. It's an ongoing battle, which although meets with very little resistance, still feels like rolling that boulder up that hill. 2010 was one of the worst years on record for organ donation: there were only 58 deceased organ donors, a 35% drop on 2009 donor levels. 1989 was the first time Ireland broke the 100 kidney transplants in a single year, which considering there were only 178 people on dialysis back then, must have had a huge impact lives of those on the transplant list. Over twenty years later in 2010, there were 1,780 people on dialysis; the 58 deceased organ donations falls far short of this new demand.

There are many reasons for this anomaly, one very obvious cause is the laudable decrease in deaths due to road traffic accidents. Other causes are less tangible - but a recent survey of the rate of donations per hospital around the country seems to indicate a lack of trained staff to broach the subject with grieving next of kin. The new programme for government includes a commitment to the introduction of an opt-out system of organ donation. This system operates on the presumption of consent: everyone is an organ donor unless they have expressly opted out. A controversial system, which is not universally welcomed by the donor community. Many feel the generosity involved in giving permission for organ donation is too enormous for others to merely presume it will be granted. Mark Murphy of the Irish Kidney Association has favoured a required request system such as exists in the US: medical staff are required by law to request permission for organ donation where appropriate. Under this system, the family can still refuse if they believe it was not the express wish of their loved one. Whatever the outcome, the debate is to be welcomed; 1,780 of our friends, family and neighbours have had their lives placed on hold due to chronic kidney failure, we owe it to them to radically increase our incidence of organ donation.

There are two new links on this blog which will give you an insight into life on dialysis and the light donation provides in the vast black hole left by the death of a loved one.

In the meantime you have the power to do something that could save a life: text the word donor to 50050 to receive your donor card or for those of you with posh mobile phones there is an e card available for both android and iPhone through the App Store.

Cheers,

Ann

World Kidney Day

Since it is World Kidney Day today and the issue of organ donation often seems so abstract, I thought I would try to explain the difference that lump of human tissue has made in our lives.

But then I didn't know where to begin, the changes are so radical, yet so utterly normal and all encompassing.

At the most basic level, there was the first golden urine we saw way back in November 2007, shining droplets, each more magical then the last, starting with a steady drip, then swelling to a thirsty flow, like the first shower in the wake of a four-year drought. Even now, over three years later, I still marvel each morning when I'm greeted by half a litre of this extraordinary elixir shining through the plastic shell of his overnight urine-drain bag.

The arrival of this fabulous, glorious liquid means that we no longer rouse our boy at 4.30 am, every Monday, Wednesday and Friday to begin the long haul to Dublin for dialysis. His ability to produce this precious juice means we have thrown away a plethora of anti-hypertension medication, along with a well-used Sphyg and Doppler machine. This much-beloved amber nectar has given him the strength to become a regular schoolboy, to fight with his big sister, to enjoy birthday parties, to get into trouble, to laugh 'till overwhelmed by hiccups; quite simply, it has allowed him to reach the ripe old age of seven and a half.

For Donor Card free text 50050 and please make your wishes known to your loved ones.

Cheers,

Ann