Thursday, 24 December 2009

Merry Christmas

Merry Christmas and a very happy New Year from Boy wonder, Jess, Chicken Lickin and the other kidney!

Wednesday, 9 December 2009

All My Birthdays and Christmases!

I'm still in shock and maybe it's because I didn't see it with my own eyes, so I still can't quite believe it. But I am more than elated to announce that boy wonder ate (yes folks you read right, 'ate' as in consumed via his own mouth)... five half tea spoons of petit filou yogurt at school today!

This may be a flash in the pan (or in this case the 'yogurt pot') but it could also be the start of something truly miraculous. I don't dare to hope...

Now if that doesn't cheer you up, I don't know what will.

Cheers
Ann

Thursday, 19 November 2009

The Translator Resigns

Well, in the titanic battle that is Barrett vs The services: round # 603 went to Rory! He has just been approved for 3 resource teaching hours a week. It only took three months, 60 phone calls, a small woodland dell worth of paper, a large lump of expletives and a crash course in relaxation techniques. We were lucky this time to escape with only minor bruising and some superficial wounds.

The outcome of Barrett vs Crumlin Hospital is less clear however. A week after my last post, and completely out of the blue, we received another letter reverting our appointment back from Jan. 27 to the original date - Nov. 18. Confused? I hear ya! Needless to say, the other kidney had re-arranged work and could no longer make it on Nov 18; the new correspondence only giving us 48 hours' notice. So, we will now re-revert (if you follow me) to the January appointment. I'm feeling both battered and baffled.

Another notable notch in our battle belt was recorded last week; it appears our services have been transferred out of Enable Ireland. Steady on! It's early days, and I fully expect a mega misunderstanding before we so much as get within a whimper of another ologist, but it's these little victories that get me out of bed on these dark, damp mornings!

If and when, a therapist or ologist appears out of the murky mist of the HSE West, trust me, you'll be the first to hear about it!

Translation? I give up!

Cheers,
Ann

Thursday, 12 November 2009

Reasons to be Grateful

I can't believe it's two years since this day; and this one. The anniversary of the transplant that kicked off this blog is being celebrated in style in our house. To all of you who have walked this road with us, we say: thank you, from the bottom of our remaining internal organs!

Please know that you have played a fundamental role in our survival and success. So raise a glass to organ donors everywhere, but in this week of rememberence, let us also think of those who have not had our good fortune.

Thank you for sticking with us: it has made a really big difference in our lives.

Cheers, (she said raising her glass..)

Ann

Friday, 6 November 2009

Lost in Translation.

Why must I stupidly insist on using norms from the real world, when experience has shown me that the rules on planet HSE are very different? Whether from innocence, indolence or ignorance I'm not sure, but I repeatedly fail to decipher the secret scripture of the health service. For example: when is an appointment not an appointment? I've recklessly been walking around all these years, using various reputable dictionaries as my point of reference when I didn't understand the meanings of certain words. For instance, with a word like appointment: I understand it to be a noun meaning an arrangement to meet at a certain time at a certain place. Please feel free to correct me if I'm mistaken here.

With this in mind I had cause recently to ring Crumlin Children's Hospital, (ah yes, my old Nemesis), to confirm a pre-op plumbing appointment for Nov. 18. After tearing through some telecommunication traps, I eventually happened on a fellow human being at the other end of the line; a rarity these days. After barking a request for Rory's rank and serial number, she confirmed his appointment for said date, time and place. Great, now I had it in writing with a follow up phone confirmation. I figured I was pretty safe in the assumption that, I indeed, did have, an appointment. However, less than 17 hours later, a letter arrives: changing that appointment. Confused? I know I was.

OK, so here's the thing: did my phone call set off a whole chain reaction which led to alteration of the appointment? In which case, wow, in under 17 hours, they work fast! I think you'll agree, given past experience, that is most unlikely. Or, is there, somewhere buried in the bowels of Crumlin hospital, a left hand, who surreptitiously changes everything that the right hand, above ground, is doing? Apparently, I now have an appointment for 27 January next, which by the way, will be almost 12 months after the appointment was first requested. Could this be the case? It might be; but then, I'm too terrified to ring and confirm it.

Recently, Rory received a diagnosis of Dispraxia from his Occupational Therapist. With such a diagnosis, he is entitled to have three hours a week, one to one, extra resource teaching in his school, to ensure he doesn't fall behind his class mates. The report was sent to the National Council For Special Education (NCSC), by all accounts: a most reputable Quango. The reply was another exercise in definition dodging. When is Dispraxia not Dispraxia? Well, apparently, in NCSCeese: ' when it doesn't impact on your education in school'. I didn't realise you could successfully complete an education when your brain had major problems telling your body what to do. Seemingly, under the new NCSC definition: Dispraxia's a doddle. For all they know; he may only have a touch of Dispraxia, or the OT was having an off day, when she wrote the report. A diagnosis, after all, might not mean he actually has the condition - in NCSCeese, so to speak.

In an effort to comply with a whole new public service dictionary, we will now occupy more scarce school time and resources filling out more forms and reports, in order to re-define an established condition, with a view to meeting the criteria of the Irish system. Are you still with me here? Exhausting, but brilliant: you see without this duplication of duties, you could never justify the numbers employed to stop children getting access to their entitlements. You couldn't make this stuff up; but, obviously, they can.

To the HSE and the Dept. of Education: I bow to your bureaucratic brilliance. I am in awe of your awfulness. I am humbled by your lack of humanity and intelligence. It is reassuring to know, in these days of fiscal frugality; that you are doing your utmost to keep meagre resources tied up in paying mad Mandarins, rather than furthering children's health and welfare.

Some day, when I finally learn to speak fluent HSEese, I might be able to make sense of all this: but until then, I remain, confused.


Cheers,
Ann

Friday, 23 October 2009

The Wisdom of Youth

I bundled these buzzing beauties off to school in fancy dress today. All dressed up for the mid term break party, Jess in her gothic glory and Rory as a Batman rip off!

As we walked to school, Jess mused aloud about how the other boys in Rory's class would be dressed. "I'll bet they all come as superheroes" She pronounced with some authority. Sensing the question forming on my lips, she then quickly expounded: "They're always superheroes until they get to first class; then they turn into baddies!"

There wasn't really much I could add to her theory, it was, in her eyes, complete. Who am I to argue with a 9 year old sage?

Cheers,

Ann

Sunday, 11 October 2009

Punching Politicians

I listened to James McDonagh as he burst into the Green Party conference on the news yesterday. I heard his anger and frustration, while his distressed 11 year old daughter asked him to stop shouting. As the tears rolled down my face, I realised that it could have been me. I know that anger, that fear, that frustration brought on by exclusion. His child has special needs and has not attended school for a year, as there is no school to take her. She urgently needs speech therapy, occupational therapy and psychology services. Are we seeing a pattern here?

I thought of his state of sheer helpless hopelessness, at his wit's end, as official after official gives him the brush off, blaming cut backs for this 'regrettable state of affairs'. I remember planning acts of civil disobedience, I remember fantasizing about chaining myself to railings. One of my more brilliant plans involved defacing all the signage in Galway Community Care offices, by inserting the word 'don't' between Community and Care. I had even enlisted the support of other frustrated parents. Then Rory got sick and priorities shifted. I still regret not doing it. I know it was pointless and petty; but boy, it would have made me feel a whole lot better. The problem with dealing with grey bureaucrats, is the contamination factor; you begin to sink to their level of small minded power struggles. It is extremely difficult to retain your dignity. I was lucky to have the other kidney filter my more militant moods.

I have worked very hard to rid myself of the residual resentment and anger. The counselling helped for a while, until it began to seem pointless. Wine was also a pacifier, but had crippling side effects! Diversions such as a movie, a trashy novel or a night out with friends, provide temporary relief, by pressing pause on the angry whirring of your brain cells. However, there is nothing, (and believe me I've researched this at length, so I know of what I speak here), that will stop the gnawing sense of dread which wakes you in a cold sweat in the dead of night. The fear for your child's future, because you can't get the help needed to get them through the difficulties they face in their childhood. It's crippling, all consuming and no parent in any civilized world that I want to inhabit, should have to go through it. Have we learned nothing from our sordid past?

The sad fact of the matter for Mr McDonagh and his family, is that even if their daughter is given access to services, as is her right as a citizen of this state, the quality of service is based on an arbitrary post code lottery. Like us, she may meet a speech therapist who has been disbarred for unsafe practice in another jurisdiction. Like us, she may meet a psychologist, so uninterested in his job, that instead of trying new means to engage with her, will write her off as a vegetable, because he couldn't be arsed to even do a Google search on her condition.

At 11 years of age, she will doubtless fall into a black hole between primary and secondary school services. She could be really lucky, and make great progress with one practitioner over a few months, only to be transferred to another service and another waiting list because her current therapist must stop seeing her at the age of 12.

Rory is now aged six, and therefore outside the scope of that laughable oxymoron called Early Intervention. We have no idea who will take over his services. Enable Ireland have still not made a real commitment to Children First Child Protection Guidelines; so we cannot on principle, allow any new therapist to see him, having no guarantee that proper background checks have been carried out. He will yet again be without services, although for the purposes of official HSE records, he is listed as receiving a service, even if we have to join another four year waiting list.

What I have learned through all of this: is to trust my child. To have faith in his ability. By giving him space with lots of love and laughter, he has defied all the hideous limitations placed on him by grey officials, jaded by their jobs. If I had listened to them, my son would have been institutionalised by now, instead, he is holding his own in an Irish language mainstream school. We are fortunate that there appears to be no underlying developmental disorders, although if you listen to our speech therapist, she will try to tell you otherwise. She advised us against mainstream school, I ignored her. When I told her how well school was going, her terse response was: "I wonder how long that will last?". I'm very proud that I didn't punch her lights out, much as I may have wanted to. It's a sign that I've moved on. Mr McDonagh and his family have a long and difficult road behind and ahead of them. His isolation is palpable. I want to storm the gates of Leinster House with him. I want to punch John Gormley, Brian Cowen and Batt O'Keeffe for him. What will that achieve?

Did you know that President Mary McAleese is the patron of Enable Ireland? She, of the glowing tributes to the victims of institutional abuse. I wonder if she knows that her name lends an imprimatur to an organisation which does not adhere to even the most basic child protection principles?

Well done Mr McDonagh, I salute your bravery, your indignation and your protection of your child. I wish you strength, comfort and solidarity. But mostly I wish you a life where your daughter is allowed to fulfill her potential, and you can get back to getting some restful sleep at night.

Cheers,

Ann


Saturday, 19 September 2009

Old Wounds And New Wonders

Did I ever mention that Our Lady's Hospital for Sick Children in Crumlin gives me a severe debilitating does of the wobbles? Since it has been the location for some of the darkest days of my life; I try to avoid going there at all costs. My avoidance tactics ran out last Thursday when the elastic on my get out of Crumlin chord snapped. A minor problem with boy wonder needed to be seen by a urologist. The urologist in charge of junior's plumbing second fix, is based in Crumlin, so, reluctantly, we returned.

The other kidney said he felt like he was experiencing post traumatic shock disorder. I knew immediately what he meant. The first year of Rory's life is a blur for me, the stress and trauma was so intense that I just prefer to park it in the past where it belongs. However, no matter how hard we try to restrain it, that old skeleton can't help giving the cupboard door a really good rattle every now and again. Lest we get ahead of ourselves!

I find it very hard to distill the essence of my aversion to Crumlin, it's a volatile cocktail of fear, rage and despair. The staff were wonderful, warm, professional and caring, the conditions on the other hand, were somewhat akin to those of a Romanian Orphanage circa 1988. These pictures will give you a taste of how we lived for three months while we learned how to dialyse our new kidneyless baby:













Back in 2003, there was no dedicated renal ward in Crumlin so we were housed in a general baby ward and exposed to all those baby infections that rear their snotty little heads every winter. Rory picked up everything that was going; many a weird and wonderful virus. One of those nasty doses landed him in back in ICU on a ventilator when he was about 7 months old. Now that was a dark day.

For respite, we had the parents' accommodation. Again it was warm and welcoming but it hadn't been decorated since the 1950's. Anytime I stayed there, I couldn't help feeling like I was sleeping in the middle of a John McGahern novel. Suffice it to say the surroundings were not conducive to the recharging of flat parental batteries. I shuffled round that hospital like a zombie for months, until one day I was, quite literally, shocked back into the land of the living. 120 volts it was, delivered with a flash as I plugged in the dialysis machine to this socket:













That was the day I got my fight back. The shock lifted me off the floor and out of my torpor. I got angry, proper red rage spots in front of the eyes, angry. That ward has since been fully refurbished and there is now a dedicated Renal ward in Crumlin hospital. Maybe someone did actually read all those letters I wrote.

I listened to the stories of organ donation on Liveline during the week, and was yet again reminded of our extraordinary good fortune.

As I type, boy wonder practices how to burp on demand, just like any other six year old boy, delighted at his new found skill.



Cheers,
Ann & Burping Boy Wonder!



Saturday, 5 September 2009

School Report

Well, week one is over. It was remarkable in it's ease, order, lack of stress and quite frankly, at the risk of boring you all...... normality!

Rory managed to sit at a desk for incrementally longer periods each day. He won stars for helping others to clean up. He held crayons, coloured pictures, played in the yard, sang songs, and sat with his classmates while they ate their lunch. By Friday, he even licked a Malteeser!

His Special Needs Assistant (SNA) is a qualified nurse with years of experience in a special school, where kids had been fed through every orifice, so boy wonder's NG tube is, dare I say it, nigh on normal to her! She manages him with such ease, grace and good humour, that he is more than happy to comply with her rules. I'm already wondering if she'd consider moving in with us!!

His teacher is warm, charming and a consummate professional. You can see the kids are just hanging on her every word. It's so lovely to watch a nurturing introduction to education. Thankfully things have changed since my days in primary school; where my abiding memory is one of terror.

I re-started my own formal education on Friday. It was quite a flashback walking round the campus of Galway university. It's been a very long time since I sat in a classroom. When I looked round at my classmates it was very clear very quickly that I was very much the elder lemon, by a very very long way. It's daunting but exhilarating.

My brain shrinking, lobe lumping, temple throbbing form filling exercise paid off as I am now the proud recipient of higher education grant. This affords me a second chance to rebuild a working life, for which I am extremely grateful.

This year will be busy, we'll be under pressure, but it'll be a pressure of our own choosing.

Cheers,
Ann







Monday, 31 August 2009

Milestone Mania

His enthusiasm caught me off guard. I had grown accustomed to his refusals. His default negative responses when faced with any mention of the word school. "Bye Bye School" had been the catch phrase of the last few weeks. Rory's like that though, he just says no to everything; just in case.

This morning when I crept in to give him is 7.30am feed and meds, he was still bundled under the blankets snuggling up to bear. I worked away at his tube, able to carry on without disturbing him. His eyes opened, just a crack, he took in the light grey morning sneaking in between the curtains. He sat up, and announced, "I'm going to school today". This was a promising start. I thought it best not to rush him so I let him have a little lie in, a few moments to contemplate his new educational fate.

We busied ourselves with the usual morning routine, uniforms were donned, toast was crunched and caffeine was administered in strong doses to the grown ups.

His regulation grey trousers were proffered, and accepted, along with the grey shirt and school jumper, which he had previously deemed to be too 'scratchy'. All were put on without so much as grunt of protest.

I had expected, if not an all out battle, at the very least some very vocal objection, none were forthcoming. He was positively jovial at the thought of the uniform. He completely blind sided me, with his cheerful acquiescence. The lump in my throat came on very suddenly and before I could swallow it down, the tell-tale brimming of the lower eyelids began. I could feel a full scale wobble coming on. It seemed completely disproportionate to the situation as Captain Sensible, just popped on his shoes and asked for his Madagascar school bag. Fair enough, the kid was going to play it cool!

We snapped the obligatory photos, the kids chuckled and off we went.

Simple as that.

The entry to the class was equally low key. He sauntered in like he owned the joint. Charmed his teacher and Special Needs Assistant.

"Slan, Chickenlicken, see ya later" was the last I heard as I rushed out the door - the fear of making a complete show of myself was now even more acute. I had one aim, get past the school gate without making eye contact with any other parent.

I hadn't allowed myself to imagine this day, it seemed far too presumptuous. Now that it's here; all nonchalance and normal, I don't quite know what to do with myself!

It has taken us six years to come from this :















To this :












Sometimes the enormity of normal just knocks the stuffing out of me!

Cheers,

Ann

Monday, 24 August 2009

The Big Six



I can't believe it's six whole years since you blasted into our lives full of fire and fun. You arrived with such a love of life, clenched, vice like, in your tiny fists. Now your hands are bigger - you can pack more in.

Happy 6th birthday boy wonder, long may you continue to amaze us.

Cheers,
Ann


Wednesday, 12 August 2009

P P S Anyone?

Can anyone tell me what exactly a PPS (Personal Public Service) number is good for? I have had cause to ponder this a lot lately. To me it seems like a quirky little Irishism, like the way you might be asked what your mother's maiden name is, or where your people might be from.

Public servants seem to either worship it or ignore it. The neat box designed to hold those hallowed digits seems to blink like a talisman for every civil servant in the land. But what exactly do they do with it?

I, of course, am far too literal and logical to ever fathom the depths of the mandarin mind. The twists and turns of those firing synapses when faced with official form filling completely bypass my sub civil servant brain.

Let me illustrate my point. I am a full-time carer, in receipt of carer's allowance; a social welfare payment which is means tested. Therefore, my means are below a certain threshold.
That's all quite straightforward. If you look up my PPS number on 'the system' it well tell you this.

I have recently decided to return to part time study. I figured I should up-skill in preparation for the day when my carer's duties reduce. I could then re-enter the work force, and maybe pay some taxes. I waded through an ocean of literature on entitlements, what one could and couldn't do in my situation. I made numerous phone calls to the nice people in the carer's allowance section of the the Dept. of Social and Family Affairs. I followed their instructions to the letter. I was officially sanctioned to apply for a Higher Education Grant. I receive the form, and am told, I have to be means tested again. But what about my PPS number? Surely it will give you all the information required? If the good people in the carer's allowance section are deemed competent enough to means test for social welfare entitlements, could we not save a whole other mountain of paper and just, you know, take their word for it?

Absolutely not! They are a completely different section of the public service, a whole new means test is essential.

So I fill out the form, queue for an hour in the dole office, taking up time that could be spent processing the many new claims, they look up my PPS number on 'the system'. It confirms my income threshold and that I am indeed a full-time carer, married with two dependent children. They then stamp the lovely pink form which has been printed by those nice people in the Higher Education Grant office and return it to me.

I then go and queue for my long form birth cert. It costs me 10 Euro. Does my PPS number not tell what age I am and that I was born in Galway some time towards the latter half of the last century? Obviously not, because the nice man in the register of births office spent quite a bit of time looking up my details on 'the system', of course this may not have been the same system.

Then the other kidney gets dragged into the fray, because I have to prove that he was mad enough to marry me 11 years ago, and that we have been living together at the same address for at least the last 3 years. He also needs to 'fess up again to how much he earns, which you know, we already did when I applied for the carers allowance. Then he needs to sign the nice pink form, to prove, well I don't know what exactly. That I have his permission to go back to education?

So then, after a week of queuing in offices and collecting various coloured forms, I bring them all to the nice man in the Higher Education Grants office. He then photocopies all my documents, stamps them, returns the originals, asks for some more evidence in paper form, and sends me on my way. Couldn't he have looked up all of this on my PPS, I am in 'the system' you know? No, they need paper proof!

I had just about recovered from this when, in a rather foolhardy gesture, I now realise, I rang the form E112 people. You know that office that eventually let us go to London to the feeding assessment clinic?It turns out she also needs a form, except this one is white, not pink.And guess what?She needs to means test us! I sheepishly suggested that, since I was in receipt of social welfare which was plain for all to see when they looked up my PPS number on 'the system', that maybe we could forgo the repeat means test. No she needed paper proof!

Am I missing something here? You see, from where I'm standing this seems like the most extraordinary waste of the little gem that could be the PPS number.

If I was a PPS number; I would be Pissed off, Put out and Sulking at this stage!

Cheers,
Ann

Tuesday, 4 August 2009

Hope of Peace

An old friend took his own life yesterday. As the shrapnel of his loss ricochets around his family and friends, it makes me think; there, but for the grace of God, go all of us.

I wish him the peace that so eluded him in this life. I hope he now feels safe.

I remembered this Seamus Heaney poem called The Rescue, it made me think of all of those who tried so hard to save him.

In the drifts of sleep I came upon you
Buried to your waist in snow.
You reached your arms out: I came to
Like water in a dream of thaw.


Safe journey home.

Friday, 17 July 2009

London Calling

I don't quite know where to begin, such has been the level of activity in our hive of late. You may remember I mentioned a feeding assessment team in London. The very sensible developmental paediatrician in Galway had offered to refer us there last November. All very straight forward you might think. Yes very straight forward indeed. As with everything associated with the HSE, it took two visits 4 months apart, approx 662 phone calls, a small forest worth of paper work, 5 hours of misinformation, a bottle of gin (- mine -medicinal ), a very near urge to take up smoking after 9 years of abstinence, and a partridge in a pear tree to actually make it all happen.

A word to the wise here, if ever you are considering dealing with long term illness and the HSE, please, please go into training. Some ex-special forces type boot camp, with some serious 'what to do if you get captured in the desert by the other side' type psychological expertise thrown in. Without it, I fear you may crack at the first hurdle. As I have been doing HSE time for almost 6 years now, my energy is prone to the odd dip into despair. At just one such trough, the bloodhounds in Temple St, came charging down the hill to my aid. They got on the phone, they set up a rota, they badgered, they pestered, pleaded and I dare say even threatened until one day 3 weeks ago, an appointment was extracted at metaphorical gun point. It left me speechless, a rarity for me I can assure you.

We sprang into action, a scramble for the dog eared London A to Z. Pins were stuck in the Tube map, cross referencing address books to see who would be kind enough to put us up for the night. A plan percolated quite quickly. The other kidney was up to his eyes with work so another grown up had to be found to help with the journey. Auntie Mags, yet again stepped fearlessly up to the plate. (One of these days she's going to wise up; and we'll be in big trouble.)

So, on Tuesday, off we went, the 3 of us, on our adventure to see the nice man who was going to talk to Rory about eating with his mouth. Rory agreed to come along but was only going to give this nice man, a very brief moment of his time. Eating with his mouth, while still a hot topic of debate in our house, is paid only, lip service, by Rory!

He handled the journey with aplomb - a seasoned air traveler, the plane held little fascination even though it had jet engines and was actually leaving the country. This was nothing compared to the train that whisked us from the airport. It had conductors in uniform and a whistle at every station; now that was the epitome of cool.

I watched with wonder as he took all of this new environment in his stride, only complaining when we weren't seeing the nice man immediately we landed, as he was in a hurry to get back home.

We got to see the nice man, a gastroenterologist, and his team, a speech therapist, clinical psychologist and a dietitian, at midday on Wed. Rory showed his usual cool, interrupting the proceedings only occasionally to insist that we go to the airport, but generally charming the entire room.

I don't really know what I expected from the visit, I knew in my heart there was no magic bullet for this situation. I did wonder though, if there was something we hadn't tried. I also had very precise questions about Rory's motivation to eat and his ability to recognise hunger. It was really refreshing and comforting to sit in a room with people who see kids like Rory every day. They made no assumptions, no tut tutting, no; I can't classify him, so I should really concentrate on what he can't do instead of what he has achieved. None of the usual; I have no barometer with which to measure, so I'll just go and use the worst case scenario scale, the default setting.

They just agreed, concurred that yes this was all totally normal given his experience. They marvelled at what he has achieved. They gave some very helpful advice, explained some of the probable psychological processes going on for him right now and praised us all in how far we'd come. It was quite amazing really, they had so much faith in Rory, I was almost taken aback. I'm so used to having his shortcomings pointed out by therapists. They just confirmed my gut feelings - let him explore the world, let him get used to feeling well, and most importantly let him lead us.

I had been giving myself such a hard time that I hadn't been consistently working with food in a very structured manner. They understood the difficulties involved and suggested we work on the fly, choosing only activities that he enjoyed. No forcing, no reward system, no passivity. He has to learn to experience and enjoy tastes for himself, not to please someone else. It makes so much sense, I had always felt this but I was a lone voice here in the West.

Very interestingly, in light of last year's Enable Ireland fiasco, the gastroenterologist agreed that any investigations into his ability to swallow are pointless at this stage. We have no evidence to suggest there is a problem, and testing would be hugely traumatic. If you're reading this; Miss crazy lady speech therapist; can I just say, in as smug a tone as I can convey in writing?
I told you so!


I just hope that you are not still working with vulnerable kids, because it has taken me exactly one year, almost to the day, to prove the irrevocable damage you could have done to my son.

Next time you try to bully a parent, just remember you are only a Google search away from being found out.

You have been warned...

Cheers,
Ann

Tuesday, 23 June 2009

A Tale of Two Days.

I remember it was very hot that August night. Somewhere along the road from Galway to Dublin, Saturday had turned into Sunday. My neck was sore from staring at the car wing mirror for 3 hours. I was straining to catch the blue flashing lights as the neonatal ambulance carrying our 2 day old son sped passed. I never saw the lights. We arrived long before them. My apprehension intensified. The ICU staff were surprised but welcoming. We were led to the parents' room down a corridor into a foreign land. Machines beeped, whooshed and pumped. Kids were plugged in and zoned out. Parents keeping a vigil by their beds. Staff were calm, in control but very serious. We were in big trouble, I knew we wouldn't leave this foreign country for a very long time, and when we did, our lives would never be the same again.

The ambulance team arrived about an hour later. They assured us all was well. Rory handled the journey and was reconnected to the ventilator in the adjoining room. It was time to let the staff do their job, someone asked if we wanted to see a priest. I declined. Tests on tiny babies take time, a lot of time. At 3.15 am a very kind consultant urologist knocked gently on the door and introduced himself. First names only, no room for titles or white coats here. He was shaking his head, not in despair, but in disbelief. It had never been seen before. No kidneys but, as he put it, lungs in pretty good nick. This was one hell of a fighter we had. We're not sure though, it's never been seen, we need more expertise. They'll be here in the morning. So we were asked to wait.

I've learned a lot about waiting since then. At that stage, I was still a novice; I didn't cope very well. 12 hours of wondering would we have to steal a last look, kiss him goodbye and turn off a whooshing machine. 12 hours of hell. I couldn't sleep and, having just given birth; sitting was still a challenge. So I walked, I walked every corridor in Crumlin hospital, railed at every holy statue and blessed virgin mocking me with their benign, trust in Us eyes. For those of you lucky enough not to have darkened the doors of that hospital, believe me that's a lot of eyes!

The night stretched into day, the morning bled into afternoon before we were released. His lungs came up trumps. The risk was worth it. It would be tough, there would be a lot of time spent in hospital, there were no guarantees, but he was given good odds. We grasped that chance with both hands and ran like hell! In the space of an hour we had re-ordered our lives, secured a house to live in, plotted our move to Dublin and remembered how to breathe in and out.

Today was just as hot as that August night, but today, he walked into his new classroom, smiled at his junior infant class mates, turned to me and said 'see ya later chickenlicken'.

What a difference a day makes.

Cheers,
Ann

Tuesday, 9 June 2009

These Are Good Days



It's been a great few weeks. The sun had it's best millinery out, and we basked in sumptuous sunshine. We ate in the garden most nights, swam in the chilly bay and ate ice cream till we felt sick.

It all started with Jess' communion - a really memorable day, not for any blingtastic bashes, but just for the fact that we had a celebration. I realised as our neighbours joined us for tea, cake and the odd drop of something stronger, that we had never had the occasion to invite them in before. We've been literally firefighting for almost 6 years. It was lovely to kick back and share a laugh.
It also gave us a long overdue chance to say thank you to all of you amazing people out there, who have opened your hearts, houses and arms to us during the dark days. Look how far we've come, now take a bow all of you, because we couldn't have done it without your support.



We can even report progress on the psychology second opinion. We had our first session last week with the new psychologist, and there's another tomorrow. So far, she appears to be of the non furry, string operated variety, but we will reserve all judgement till the final report. Just the old superstition of chicken counting and eggs hatching, you know how it is.

Plans for Rory's launch into full time education in Sept are gathering pace. So far, we seem to have dodged the cut backs and it looks like he will be approved for a Special Needs Assistant. Again caution is advised on chicken head counts here also. But fools that we are; we live in hope.

I've been busy trying to keep fit - remember those new years resolutions? In an effort to put my money where my cake hole is, I signed up for a sponsored swim (well two actually; but more about that anon). So far we have raised a tidy sum for the Ian Daly Swim a Mile with a smile for Barretstown. Feel free to log on and donate to this wonderful cause. I nearly had to be hospitalized and it cost me a fortune in physio, but I did it. I was not alone; auntie Mags, complete with dodgy arm was one of our star swimmers. A huge thanks must also go to Orla, Jen and Damien in the Ardilaun leisure club, who, bless them, didn't need any coercion to get involved. So we're all feeling nauseatingly smug at the moment!

The twists and turns of this journey will always catch me off guard. This blogging business has become such a major part of my life. I am now involved in the lives of people I've never even met. I worry about their kids, their desire to have kids and their on going health issues. They, in turn come and visit here, to leave messages of support and encouragement. But today, I was literally blown away by two posts.

Steph is facing some major surgery, but with an optimism and chutzpah that just takes the floor from under me. She is an inspiration. The other major news is that Xbox is going to be a Dad.Big sissy that I am, I wept with joy reading that post this morning.

Of course I've heard nothing back from Enable Ireland, but honestly, did you expect anything?

These are good days; so lets not waste them.

Cheers,
Ann

Tuesday, 26 May 2009

Enough

It's been a draining week. Listening to the catalogue of crimes against humanity perpetrated by the Irish state and religious orders has been very disturbing. What has caused me most pain is the response of the HSE, assuring us that it can't possibly happen now as there are safeguards in place.

This is not true. These so called safeguards, of which they speak, consist of a voluntary code of practice called The Children First Guidelines. They have no legal basis and are not uniformly implemented across the sate.

Last summer my son was put at risk by a dangerous therapist working for Enable Ireland, an organisation which claims to adhere to these safeguards. When the risk was exposed; they lied, bullied and hired very expensive legal counsel. No action was taken. Although they have been proven to be in breach of Children First Guidelines, there is no sanction available for this breach. I have no where to go with my complaint.

Last week, just prior to the publication of the Ryan report on Institutionalised child abuse in Ireland, they sent me yet another waste of paper in response to their negligence towards my vulnerable son. I am no longer prepared to engage in a game of paper ping pong with people who do not share a decent moral code. This has to stop.

I've had enough, so I wrote this letter:

Director of Services,
Enable Ireland
Seamus Quirke Road
Newcastle
Galway


May 25th 2009,

Dear Clare,

I was dismayed to receive a copy of your ‘Protocol for the management of suspected child abuse’ on May 8th last.

The risk, to which my son was exposed, by the lack of adherence to the Children First Guidelines during the dismissal of your speech therapist, has already been established. The time for sending me this document has long since past.

In a week which has seen the publication of the Ryan report on institutional child abuse in this country, it is deeply distressing for me, as a parent, to see that organisations charged with child welfare are still failing our most vulnerable.

Please stop prevaricating, I want you to carry out a full disciplinary hearing on why this was allowed to happen to my son, I want to know exactly how many other children were put at risk. I want cast iron, binding procedures put in place that will ensure this will never happen again.

This is a moral and ethical issue, please stop hiding behind bureaucracy and be big enough to take a stand on child welfare.

I would be grateful if any further correspondence from you detailed only action, not excuses.

Yours sincerely,



I doubt I will get a meaningful response.

Cheers,

Ann

Sunday, 10 May 2009

MacGyver Moments



Rory's personal plumbing can best be described as unorthodox. He passes urine through a little slit in his abdomen. For a lad that never peed until way past his 4th birthday, we consider it a major achievement - it could come out of worse places!

Management of this uber alternative u-bend, is pretty straight forward, but it does require a certain level of inventiveness. During the day, we slip a pad into his nappy to collect the constant drip. This pad is a classic of the maternal necessity, school of invention. Pad's, of the like required by our lad, are not what you would call, an over the counter item. They are the product of much discussion, trial and error. Thanks to the bright sparks in Temple St., we happened on our current model; a new born nappy cut in half with a strip of Mepore tape stuck across the top.

I tend to make them in dozen batches, usually while watching telly in the evening. It's a real Blue Peter experience, scissors, sticky tape - the whole kit. I have it off to a fine art now and can rustle up a batch before the tea is even drawn! The pad usually lasts just shy of about two hours before the telltale wet patch becomes visible on his shirt.

At night we attach a bag with a 2 litre capacity, although a late starter, he now pees like a pro.There is no road map for urine routes such as his. He's a one off. A bit like speeding up the M1 before the official opening, without a sat nav. Each new stage, has us scratching our collective heads.

We've arrived at an un-signposted cross roads. The tube, his almost new ureter, which conveys the urine from his reconditioned second hand kidney, is also a miracle of recycling. This ureter came with the kidney and, well, although it came from one former, carefulish owner, it has been around a couple of decades longer than it's current owner. In short, and really no pun intended here, it is not going to grow with our bolting boy. Here's where the law's of physics are very visible, as he grows the ureter is stretched, and as this tube stretches, the hole at the end gets narrower.

We've been monitoring this for a while, we even had the opening surgically dilated in Crumlin back in February. After this procedure, I was granted yet another unenviable medical task; that of stretching it daily. Now, I've learned some procedures, since Rory was born, many were not pleasant; injecting EPO into a 3 month old thigh, passing NG tubes, but I did them as they were keeping my boy wonder alive. But, I have to fess up here and admit that stretching a urostomy with, what looks, for all the world, like a stainless steel crochet hook; is, put mildly, my least favourite procedure to date! I often wonder, if years from now, he'll fill expensive hours of therapy with memories of his mother plunging stainless steel hooks into his stomach! Well at least it'll give him something colourful to recount!

I noticed last week that my daily stretchings were becoming a much more difficult affair. The opening was getting visibly smaller. Now as you can imagine, I watch urine flow down his plastic bag at night, in the same way that a new mother neurotically checks that her new born is still breathing. An interruption of flow is just too horrifying to even contemplate, so it was with a heavy heart that I contacted the hospital on Friday morning.

I had prepared myself to leg it to Dublin. Luckily, the other kidney was not away on one of his very frequent 3 week work trips abroad. So on the face of it, a Friday dash to Dublin was completely manageable. Jess could stay with her Dad, while boy wonder and myself crossed the country. The phone calls back and forth were promising, maybe we could hold off on the dash. A variety of surgeons and ologists were consulted, and finally arrived at the solution of getting a smaller crochet hook! Simple yet brilliant. For the sake of expediency, it was suggested that I try to borrow one from Galway hospital.

I phoned the always helpful Paeds dept. I was greeted with the usual warmth, concern and large doses of common sense. The nurse who answered, gave me all the relevant contact details, but just as we were winding down the conversation, she asked if the implement in question was available in Temple St. When I confirmed that was the case, she suggested I get them to put one on a train to Galway immediately as it would be a lot quicker than trying to track one down this side of the Shannon. I was instantly struck by the genius of the suggestion.

So, our sainted consultant in Temple St procured the implement, and I called our former dialysis taxi driver to pick it up and deliver to Heuston station. Fortunately, these two links in the chain are made of solid gold. The consultant personally packed up his two preferred options, and the taxi driver charged through lunch time traffic to meet the 14h35 to Galway.

She arrived on time, only to find a sign proclaiming that Fastrack had ceased trading! Now, way back in the days when I had a career, Irish Rail's courier service, Fastrack was my very flexible friend. I could practically recite the timetable by heart. How had this bastion of Irish communication, the purveyor of all things provincial, been closed without my knowledge? I was dumbfounded; now what?

The taxi driver said she would investigate further. The next phone call, was a hoot! I have no idea what she said, threatened or promised, but all I know, is that the package was thrust into the hands of the train driver who personally guaranteed to deliver it into the hands of the other kidney in Galway station! I love it when the old Ireland shines through all the shallow gloss of progress!

By 17h22 the new smaller medical thingamagiggy was in my hands. All it took was a further call to the consultant to compare size with our current incumbent and the job was oxo!

MacGyver would have been proud.

Cheers,

Ann

Tuesday, 5 May 2009

The Rogue's Progress





For some reason, I have a really vivid recollection of last year's May bank holiday weekend. I remember the weather was beautiful, we spent most of it in the garden pottering. Rory was battling a cold and I was sure we wouldn't see out the weekend without a transfer to Temple St.I was wrong, he beat the bug. It was the first time he shook off a dose on his own, a big milestone. I really began to readjust my radars, his new kidney was changing the rules of our lives in so many ways, we almost had to learn a whole new script. We were still travelling to Dublin once or twice a week. I had been trained to access his central line and take blood myself. A nerve racking procedure, inducing severe bouts of jelly legs and much dryness of my throat, but it's amazing what you're prepared to do to avoid another regular trip to Dublin!

This year, the weather failed to delight, but Rory manged to shine incandescently! While the sky was so thick with rain, it was literally hanging into the ditch, Rory sang his heart out and promised us all that once the rain stopped, we'd go to the playground. His joy at spending time with his family barely contained. Having stripped the sofa of all cushions, he and Jess bounced rolled, giggled and tumbled their way from Friday to Monday. Jess wisely remarked that; " you don't have to be cracked to live in our house; but it helps!"

A conversation through the comments of my last post made me realise, I have been doing it again; only posting about boy wonder when I have a complaint about the system. So today I'm taking a moment to revel in how far we've come on this most exciting of journeys.

I can't even begin to detail the progress of this last year there has been so much. So much, for which we are incapable of expressing the immensity of our gratitude. Maybe these few photos will give you a glimpse of the the Rogue's wondrous progress.

Cheers,

Ann

Saturday, 25 April 2009

Moving from the land of the unwell


Some eminent academic once described living with long term illness as 'migrating to the land of the unwell'. Very apt indeed. As a family, we've been residents of the land of the unwell for nearly 6 years now. It's a funny place, the land of the unwell, very isolated and with a very strange social order. Like any land, there are some amazing residents there, but there are also some who are not really what you would call good neighbours.

Making the transition from the land of the unwell is not that simple. For a start one has to be, in short, well. We're not totally well yet but we're not unwell either. We don't have a disability as such, but we do have some catching up to do. So that places us in limbo, somewhere between the land of the unwell and the land of the well. When you live in this limbo, bureaucracies don't quite know how to deal with you.

Take boy wonder for example, he's getting ready for mainstream school in September. This will not be possible without a Special Needs Assistant (SNA) and some intensive resource teaching hours. The SNA will not be an issue as he is incontinent and still doesn't eat, so it's a fairly straight forward medical requirement. The resource hours, on the other hand, are a bit more tricky. To qualify, he must have a permanent physical disability. We could say that as a result of a congenital defect, in his case, the absence of kidneys, he has a disability that is profound but hopefully not permanent.

However, I must supply proof. But there's a glitch. Due to a fundamental disagreement,I can't supply the very nice people in the NCSE (National Council For Special Education) with any of his reports from his Needs Assessment. The first problem is that his psychology report maintains that he has an IQ of less than 70. The reason, our learned friend, the Enable Ireland psychologist, came to this rather bizarre conclusion, is that most of the tests he carried out on Rory, related to food and eating. Having never eaten in his life, Rory simply refused to engage, ergo less than normal IQ. Brilliant.

So, I asked for a second opinion, almost a year ago now, as is my legal right under that bad joke that passes for legislation, the Disability Act 2005. In the meantime, as you may recall, I became involved in a battle with Enable Ireland over their lack of a child protection policy when screening staff.

Mysteriously my second opinion never materialises.

So now, in order to get my child the support he needs in school, I am dealing with a report that says mainstream school could never be an option for a boy with such a low IQ. Meanwhile my son is thriving in an Irish language preschool handling bilingualism with the kind of panache that only kids can display.

He doesn't have a diagnosis, just a suspicion by a muppet with a psychology degree but no common sense. He can't be assessed for ASD or any other form of intellectual disability because he is in Enable Ireland, they only do physical disability. Child and Adolescent Mental Health Services (CAHMS) won't touch him because of his psychology report. I can't access summer tuition for him because he doesn't have a diagnosis. I can't get a diagnosis because according to his psychology report, he is a human vegetable. Are you still with me?

I got thick last week and threatened legal action. I have just been informed that, I will have a second opinion within 10 weeks.

Should I call the removal van? Are we on our way?

Cheers,
Ann

Saturday, 18 April 2009

Empty Nest

I'd been trying really hard not to faff, in fact I'd been positively hands off chez Mme Robin. So bleeding hands of; that I missed the main event! I could kick myself - I should have known the shift from helicopter landlady to absentee was way too drastic, I should have just hovered discretely. You see, more than once over the last week, I had convinced myself that the whole Robin family had been wiped out by a smug cat, new to the neighbourhood. You know the kind, all knowing swagger and bling collars! I was forced to shoo him on many an occasion, as he was lurking far too close to Ms Robin's hood for my liking! So apologies to said smug cat - you may be innocent of this crime but this doesn't mean I have to like you!

Events reached a critical point yesterday afternoon, the chicks were very still - I had my macabre suspicions confirmed by other responsible grown ups. I even had phone counselling from my brother, who's pretty in the know with all things wildlifey. I was rehearsing the "sit down kids, I've got something to tell you..." speech. I was a bundle of stress. My neck was on the point of seizing up completely! Then, just as I was about to reach for the Neurofen, I decided on one last look. I was greeted by 4 beady eyes - the spit of their mother's, with that 'there she is faffing again' look. Oh the relief, I am now immune to Robin reproach, it was a joy to be belittled by them!

I went to bed with a light heart and an easy conscience, full of the promise of the wonderful photos I would take in the morning. So, bright and early today, sufficiently caffeinated and wearing my glasses, I went out with camera poised ready for the award winning shot. There they were, gone! They had upped and left without so much as thank you note. A bitter sweet departure, still it beats being eaten by that smug cat.

Thanks to the wonders of 'tinternet', I am happy to report that there is a much more observant robin room mate out there in cyberspace, and he has even recorded his robin's sojourn with day by day photos. All of which are revealed in technicolour here.

As for me, well, next time I will do better, I promise.

Cheers,
Ann

Wednesday, 8 April 2009

Reasons To Be Cheerful.....

One,


Two,



Three,




Ok, so I'm no wildlife photographer, but you can still get the idea! Approx. 2 feet from my kitchen door, a robin, clearly showning enormous trust in us, (or with nerves of steel), has decided to make her home in ours! Watching her settle in without so much as an IKEA catalogue to help with the colour palette, has been an inspiration. The kids are enchanted.

The eggs hatched on Sunday, I have no idea when they may fly - Any advice? We feel a huge responsibility to this family; we really want to make sure they get the best start. It's all very lovely, but now I have another family's woes to keep me awake at night. How will she manage in this recession? Will her child benefit be taxed? What about health care? The right schools? It's going to get very crowded in there, will she have the means to trade up to a modest 3 bed semi? No sign of Mr Robin though - will she qualify for lone parents allowance? Do single mothers with 5 kids get mortgages nowadays? Where do robins go for this kind of advice? It's exhausting.

I try to share these concerns with her, sensitively broaching the subject, but she just gives me the look. The one that says; 'I'm in control, stop faffing'.

I'm taking lots of inspiration from this visiting family - they just seem to smile in the face of adversity. What an honour to share our home with such excellent house guests!

Cheers,
Ann

Tuesday, 31 March 2009

Organ Donor Awareness Week 28th March - 4th April


Given the week that's in it, I thought it might be useful to look at the statistics behind the gift of an organ.

Last year 81 families in Ireland were visited by unspeakable grief with the loss of a loved one. When death came calling, in the throes of their pain, they thought of others; and agreed to organ donation.

Because of their ultimate gift, there are now 136 people leading happy healthy lives with new kidneys, 12 of them also received a pancreas, 58 are thriving with new livers, 4 are celebrating life with new hearts, and 4 are filling their new lungs with great gulps of fresh air. That makes over 202 people, who's lives were saved by 214 donated organs. A further 10 living donors courageously made the gift of a kidney to a family member or loved one. All told that's 212 families who were given a second chance.

I know all about second chances. Our second chance means that we no longer get up at 4.30 am every Monday, Wednesday and Friday to go to Dublin for Dialysis. Our second chance means that we can go on our first ever family holiday. Our second chance means our family doesn't have to be separated by frequent long hospital admissions. Our second chance means that Rory can pee!

While I know a lot about second chances, I also know about loss. On the 13th of July 1988 my sister was mowed down by a drunken driver. We would have liked to have donated her organs but she was killed on impact. It would have helped the chaos of my grief, if her death could have saved a life.

Please think about carrying a Donor Card, and if you do, please make your wishes known to your nearest and dearest.

Cheers,
Ann

Tuesday, 24 March 2009

Why Do I Bother

I'm fit to be tied. Really close to blowing a gasket this time! I am now, reluctantly, with Rory attending Enable Ireland for Occupational Therapy. It may be now 'safe' but it is still very far from satisfactory!

So, I've made a series of appointments at 2 weekly intervals with the OT. She only works on Mondays and Tuesdays, and Rory's in school on those mornings, so we settle on mid afternoons on Tuesdays. Nothing much complicated there. What with all the to-ing and fro-ing to Dublin lately, we had to cancel our last appointment. This took some perseverance, if any of you out there have ever had the grave misfortune to require the services of Enable Ireland, you will be aware that making telephone contact with employees incarcerated in that institution, is very much a hit and miss affair. So not trusting the messaging system, I also, as a plan B contingency type measure, left a message on the therapist's mobile. This, I might add, was done under considerable stress, from Rory's bedside in Temple St.

I attended today as planned and checked in with receptionist. The receptionist failed to reach the OT by phone so we were told to wait. We took up our appointed waiting positions opposite the receptionist. Now, waiting with Rory is an art from. The required skill set lies somewhere between that of a mother superior and Coco the Clown. I manged to pull it off for a while but after 30 exhausting minutes, I asked the receptionist to try to phone the OT one more time.

He went in search, and came back soon after to tell me that she was out sick. I asked if it was not common practice to cancel appointments when someone is sick, he smiled and replied "I didn't know". I reminded him that we had already been waiting half an hour, he smiled and replied "I didn't know".There isn't enough cake and wine on the planet to sort out the rage in which I stormed out of that building. But mind you, the racy little Rioja I'm now nursing is dulling the edges of the throbbing pain.

But seriously folks, why do I bother?

Cheers,
Ann

Update: Wed 25th March
There was a very contrite phone call first thing this morning from Enable Ireland apologizing for yesterday's screw up. A secretary had been detailed to phone me and had forgotten. I still don't know why absences due to illness are not documented at reception. Maybe that's just far too sensible and just not the done thing in HSE funded institutions! I should also note that while I was there yesterday, I counted a total of 8 employees wandering around, Rory was the only client. Well equipped treatment rooms, and a brand spanking new hydrotherapy pool, were empty, like ghost towns. Where were the kids who desperately need this valuable therapy? They were all on a waiting list. Current average waiting time in the Galway area? 4 years.

Sunday, 15 March 2009

Let Her Eat Cake Instead.


It's been a long week. I'm tired. Bone tired. My body feels like it has done a few rounds with Mike Tyson. But, mostly my soul, spirit, essence whatever you want to call it, is exhausted. Exhausted in the way that you find yourself mid conversation with well meaning friends and you just want to give up. I don't mean that in a depressed way, I just mean that my story is beginning to to bore me. It's just so tedious, I'm either railing about the mess of our health service or raving about the wonderful kindness of healthcare workers. It's like living in the extreme swings of yin and yang. I can see people around me are bored now too, as their eyes glaze over when I try to explain the next round of bladder work needed for Rory's unorthodox plumbing. It's that, 'please, no more, I thought you were all sorted since the kidney' response that I don't know whether it makes me want to laugh or cry.

I can't bear another suggestion of 'why don't you write to your TD?' when I recount yet another injustice. Just for the record, I've been to, my TD (and some other people's ones also), the press, Mary Harney, Brendan Drumm, Patient Safety in the Dept. of Health, the Ombudsman for Children, the Health and Safety Authority, Mickey Mouse and Elvis Presley. So for, the results have been only neglible. I can already feel all those positive outlook new year's resolutions slipping, and it's only March. I don't want this life, not for me or my family. I don't want us to be defined by a medical condition. I'm sick listening to myself. I just want it to stop.

Fortunately, I'm not so brow beaten that I can't appreciate the glory of a house with two amazing, belly chuckling, throat tickling kids. There's hope for me yet! But, I really do have to work hard at not letting the system wind me up so much. It's incredibly difficult though, when you are your child's only advocate. His condition, forces us at times to make medical decisions which will affect his quality of life for years to come. It's a big responsibility.I don't feel in any way that we may have failed him, quite the contrary, it's just that continuing to ensure the best is utterly exhausting.

I'm taking myself in hand, for the next few days, fun is the only thing on the agenda. I want to laugh those laughs that come up from your toes. I want to walk on the beach with the wind blowing the cobwebs away. I want to drink wine and eat cake till it comes out my ears!

Any takers?

Cheers,
Ann

Monday, 9 March 2009

Does He Really Need To Go Tonight?




It's been an eventful weekend. It started with a large vomit at 6.30 am on Fri. I had a feeling in me waters that, for Rory, this was going get worse before it got better. Me waters are rarely wrong. As the day progressed, the bug took hold. Phone calls back and forth to Temple St. ironed out a plan. The plan then changed hourly. Initially, I had some success giving saline fluids down his NG tube. But, as the afternoon rolled on, he was tolerating less and less and I was playing catch up with his fluid balance. If action wasn't taken quickly, we were looking at dehydration, which is never a good idea with a transplanted kidney.

We assessed the situation, weighed up the time it would take in Friday evening traffic to get to Temple St., versus the time it would take for Rory to get into difficulty. I/V fluids were required fast. With the team in Temple St., we made the decision to go to Galway hospital to get an i/v line started before transfer to Dublin.

The Paeds unit in Galway has been an invaluable support to us. The nursing staff there are second to none. They provide that wonderful combination of professionalism and humanity.So, I made all the arrangements, left Jess with her granny and auntie, then made a run for it.We were met at the door, they had liaised with our consultant in Dublin and a bed was waiting.So we checked in, and watched helplessly as this group of highly trained professionals had to wait for registrars to arrive from various other wards in the hospital to put a cannula into Rory's arm. It was not a pleasant wait.

Now, I feel that the 5 years I've just put in, allows me to speak with some authority on how to get blood from children. There is no nice way to do it. The kindest thing you can do for a child is be swift. Lessen the stress by having all you need prepared in advance, and don't let the child see the paraphernalia until you are ready to stick the needle in, draw the blood, and then get the hell out of the room. Putting a tourniquet on their arm and then realising you're missing a vital piece of kit is not an option. We didn't manage to get i/v access to Rory as the Registrar had to cover many other wards in the hospital and Rory was not an easy case. The consultant in Dublin called a halt and asked for Rory to be transferred immediately without delay by ambulance to Temple St.

So acting on consultant's orders, the highly trained wonderful nursing staff phoned ambulance control in Castlebar at 10.00pm. The call was greeted with annoyance, as the controller impatiently asked 'Does the child have to go tonight?' OK, now here's where I loose the plot. Where exactly, did that ambulance control phone operator do their training in paediatric nephrology? When did their job of delivering ambulances requested by consultants, morph into a second guessing of those same consultants? The Paeds nurse, fair play to her, remained calm in the face of such insanity and politely answered yes, he did indeed need to go tonight. It was 10pm on a Fri night - what did they think, I was on my way to some designer shoe sale? Piqued by the answer, our friend the consultant nephrologist ambulance controller, then inquired if the patient had private health insurance!

That's when I put a stop to the conversation, I was in no mood to be insulted any further by another HSE Muppet. We called a taxi and, with a pump very kindly on loan from those wonderful nurses, I managed to continue to pump i/v fluids into my son's NG tube arriving in Temple st at 1.30am.

It's not enough that I have to worry about my son's health, but I also now have to defend his use of the health service. I am no longer shocked when I see that patient respect is non existent, I've been desensitized so much over the last 5 years. However, I was shocked to see the complete erosion of respect for the professionalism of health care workers. Paediatric nurses are highly trained busy professionals, they are overworked and often abused by the public. They now have to take abuse from Muppets at the end of a phone who are abusing their power.

I don't know about you, but I've just about had enough.

Monday, 2 March 2009

Anyone seen my tooth?



It's a blurry picture, I know, but it was not so much a moving target as a speeding one. But wow, what big news Rory lost his first tooth yesterday! And believe me, I do mean lost in both senses of the word. We have scoured the house and it's not to be found. The current consensus is that he must have swallowed it. Before you leap in, no, the irony is not lost on me. He won't use his teeth to eat anything, yet chooses instead, to eat his teeth. Well at least, we can add that to the list of single items consumed, it's a short list, so far featuring only a single Rice Krispie and a front tooth.

Of course the whereabouts of this tooth does pose a new dilemma. If indeed it was swallowed, would the tooth fairy mind if we, you know, waited for it to, well, put delicately, exit again? Obviously, we would clean it up before leaving it out for collection. Anyone know what usually happens in situations such as this? However, strictly 'entre nous', from the state of his nappies, if I were the tooth fairy, I'd happily accept an I.O.U.

Cheers,
Ann

Tuesday, 24 February 2009

Once more into the Breach!



With the change of guard now official since Feb. 1st, it was now deemed safe for us to return to Enable Ireland, for the first time since last summer. That old fire breathing dragon was no longer stalking the gate. Mind you, I still can't be 100% sure that the Children First child protection guidelines are now back on the menu, but that's an improvement on being 100% sure that they were off, as was the case during the former dragon's tenure! Nobody warns you of these ethical dilemmas when you venture forth into the great grey unknown of Irish disability services. You see, for the last six months, Rory hasn't been able to access Occupational Therapy, Physiotherapy or Psychology services. They were on offer alright, but I couldn't guarantee his safety where they were on offer. My Hobson's choice was to a. send my son for treatment to an organisation, where the management were ignoring national child protection guidelines, or b. not send him for therapy at all.

So, operating on the maxim that has stood me in good stead up to now, I chose the latter, as I reasoned that no therapy was better that bad therapy. Luckily for us we were able to work with Rory at home and he continues to make progress. Of course, we'd have made much more substantial progress with the help of qualified therapists but, such is the joy of the Irish system! The outcome for the child is never a priority. Enable Ireland, yes another great mind numbingly, moronic moniker of the HSE variety. Who exactly are they enabling? My contact with them has left me decidedly disabled, mentally and emotionally.

The more encounters I have with the system, the more I feel like poor old Inspector Clouseau, as some other branch of the HSE leaps, Kato like, from a wardrobe in an attempt to flatten me. I wonder if there's some ancient Asian martial art that can protect you against brainless bureaucracies? A kind of queue jumping Judo or a report busting Karate? A Kung Fu for form fillers? I could train as a HSE Mandarin mangling master! I could get a black belt in bureaucrat banjaxing! I think I could be on to something here!

.....Or maybe, it's just that this time, I really have lost it.

Cheers,
Ann

Wednesday, 11 February 2009

Is This A Sign?

I've just been sent an application for E112 funding - this is for treatment outside the state. It seems we're being referred to a feeding clinic in London. I say it seems, as, since I don't officially have a copy of the paediatrician's report, I can only assume that's what is in fact, happening. Should I be hopeful? Cynical? Joyful? Impressed? Relieved? Bored? You see, without all the information, I find it difficult to come up with the appropriate reaction.

So, I did as I was asked, filled out the form and sent it back. I suppose now I wait. I wonder if they'll contact me when or if we are to go to London? Maybe they'll tell everyone else on the team and hopefully the news would filter through to us eventually. But then again, if they haven't told us already, would we really need to go? Maybe the doctors could just, I don't know, talk to each other and well, just ignore us, we're probably only in the way.

But, should I pack a bag, just in case?

Cheers,
Ann

Sunday, 8 February 2009

Steps Forward and Backward

Well some of my January list of battles have been well dented this week! Who'd of thought we'd see results so fast? Of course in typical Irish fashion, what the HSE giveth with one hand, it taketh away with the other!

Ok lets start with the goodish news:

Low and behold, didn't we get another pair of shoes! In this climate, I am rating that as a personal coup. Rory's very pleased with the noise they make. Could this mean that HSE policy is now to actually finish orthotic treatment once it's started? Surely not? Such common sense and foresight would be tantamount to treason in this economic winter of discontent. Well, for whatever collective rush of blood to the head that resulted in this podiatristric (is that a word?) bounty, we are truly grateful!

There are also unconfirmed reports of a Paediatrician's letter floating around in the ether. Seemingly, it has been sent to a number of people connected with Rory's case, GP's, Speech Therapists, Nephprologists and the like. However, it was not deemed appropriate for the eyes of his parents. Proper order too, I say, you couldn't be giving the patient their own notes. What would we know about the situation? We're only his parents and the former owner of his new kidney. I do hope it proves helpful, this report, but mostly, I hope it says nice things about us. Maybe this is another record, we met the Paediatrician on Nov 20th and the report goes out in Feb., what's that? A little over 8 weeks? Good job his global developmental delay isn't fatal! Mind you, I think my own development is going into decline a this stage!

Now here's the 'taketh away' bit. Community Don't Care has cut back our nursing cover for Rory by 70%. So we can kiss goodbye to 70% of our current short sleep supply 'till he learns to eat and pee on his own. This particular blow was delivered on Christmas Eve, nice touch eh? We appealed, naturally, but got the big fat NO on Fri.

Not to be outdone, by Community Don't Care, the Ambulance Service has cut our transport to clinics in Temple St. I now have to work out how to drive while emptying a urine bag in the back seat. Anyone out there with any experience of the gymnastics required for this? Please get in touch, I'm going to need some tips. The logic behind this decision being, that transport stops 6 months post transplant, and fair dues we are now over a year out. A very fine rule this is too, if you are an adult and you can go to your local nephology service. We've no one to blame but ourselves you know. On reflection, it may have been ill advised to have a chronically ill child while residing outside the greater Dublin area, what were we thinking? Be warned any of you out there who may be considering a similar lifestyle choice! But rules is rules and Rory has broken way too many in his short life and the powers that be are getting a tad tetchy. He defied them all by surviving, now it's payback time! As our friend in Community Don't Care likes to remind us, he has clocked up quite a bill with the state already.

I wonder if they'd give us a credit note for the kidney?

Cheers,
Ann

Thursday, 5 February 2009

Hope Springs Eternal


I'm back, refreshed and ready for action. I've been reflecting a lot on our situation, it's been really good to have time to process the last 5 years. Much of it has been quite un-processable! So those were the bits I parked and filed under ' to be attended to at some undetermined time in the future'. As the old saying goes ' no problem is too big that it can't be run away from'.

It's funny how reflection happens in snippets, events drift in and out of your mind, often triggered by seemingly unrelated events. The historic inauguration of President Obama, and the appearance of the first Daffodils has me pondering on the nature of hope. It's a word we bandy about with such ease, we roll it off our tongues without too much thought. I remember times when Rory was very sick people would often say - where there's life, there's hope. I never understood them, at times I even wondered if they themselves understood what they were saying. Even if they didn't, hearing the sincerity of their concern for our family, felt like a lull in the storm.

Hope's a funny one though, it's not always easy to maintain. I look on hope as a gift - not unlike that of religious faith (a gift, I personally have never received). This is not just a passive gift, it can't just be passed on without being continuously nurtured. Like the dying embers of a fire, hope is fragile and has to be stoked continuously. It takes courage, energy, tenacity and, lets be frank, a certain insanity to keep it going. Although blessed with a fundamentally optimistic disposition, I frequently struggle to maintain hope. But then, here's the another thing about hope, it can be lost and then found again without recrimination. When energy lags and the embers struggle to glow, the flame can go dormant, then when you least expect it, some whisper of wind from left field, will tickle life back into to smouldering ashes. When hope is passed between us, we have a responsibility to package it well, like fine bone china, it needs to be handled with care. The receipt of it is also a big responsibility, as hope like fine china, once broken, doesn't stick back together again without leaving a scar.

As the combination of expectation and desire, our ability to hope is often tied up with our sense of self worth. Hope needs the nutrients of self esteem to survive. Obama's message of equality and righting of old wrongs is hugely powerful, as he is the visual embodiment of that hope fulfilled. Daffodils are the proof that light comes again each year after the dark winter. Lets face it, if we loose hope what have we left? This is all very philosophical, I hear you say, but where is it leading? The short answer is, I don't know, but I just felt I had to give you some insight into my current state of mind. My hope is still alive but it 's currently on life support.

On Monday, I got a letter from Enable Ireland. The woman who knowingly allowed my son to be referred to a dangerous speech and language therapist, has been promoted. After all the complaints, the findings, the tears and the downright terror, she has been rewarded for her negligence, reckless endangerment and lack of due diligence. It is very hard for me to hope that Enable Ireland will ever be able to provide for my son's needs. It is very hard for me to hope that my son's needs will be met in this country.

So, I've been thinking, maybe I've been placing my valuable, hard earned hope in the wrong place. My hope is now going to reside with people who are capable of nurturing it, not inhumane institutions who have no concept of the fragility of hope.

I'm already looking on the bright side, at least that bat has left and I don't have to deal with her anymore. Would it be audacious of me to hope that her successor is more humane?

No, that would be just plain irresponsible.


Cheers,
Ann

Monday, 12 January 2009

Taking Stock

I'm taking a little rest for the next two weeks, so may not be blogging for the duration. I am going to clear my head, draw the battle lines and carefully choose my campaigns.

My draft list of on going skirmishes is as follows:

  • Remember that nice paediatrician we saw in November? Well, it turns out, I was right not to get my hopes up, even after follow up phone calls from my good self, we have heard exactly; zip, nada, nothing. That second opinion on the psychology assessment? Nothing. That referral to the feeding clinic in London? Zilch.

  • The old thorny issue of the orthotic shoes has reared its ugly head again, Rory, the irresponsible thug, has only gone and grown out of the last pair! The cheek of him. We've been measured for a new pair, and assured that we need them, but the approval ? A big fat nothing, we wait.

  • We made many official complaints about the fact that Enable Ireland, in knowingly referring our son to a dangerous speech therapist, were in breach of Children First national child protection guidelines. This resulted in a lengthy HSE report, which stated that there were serious questions to be answered by Enable Ireland. Silence drifts off the now, dusty report. We were advised to get a good legal team behind us, as the serried ranks of safety net quangos, set up to investigate, are completely impotent. Any one for a spot of public sector cuts here?

  • A TD raised a question in the Dail on our behalf. What did we get? A letter from my old friend - (the 'do you know how much you son has cost us?' manager from Community Don't Care) listing just how much therapy Rory's getting. No word on child protection guidelines or Enable Ireland's conduct though.

  • We returned to the Ombudsman for Children on the whole sorry affair. We were met with a polite, please form an orderly queue, response from an overloaded case worker.

  • We have refused to darken the door of Enable Ireland until we get some answers, we have no confidence in their vetting procedure for hiring staff. As a result, we can't access services as Rory's case cannot be transferred to community services, without first going through an internal inquiry in Enable Ireland - Frankly, after what we've seen of that excuse for an organisation, I'd rather stick hot needles in my eyes. We get regular letters expressing concern for Rory's best interests from the Director of Services, a misnomer if ever there was one, she doesn't direct and we haven't seen any services! She must type them while oiling the lock on the stable door as the horse runs down the driveway! She even threatened to withdraw his special needs assistant from pre-school if we didn't behave. Yawn.

  • We have to wind ourselves up for major surgery this summer, it will happen in the UK as the expertise is not available in Ireland. I have no problem with this, but it will, however, demand a certain amount of logistical planning on our part. I need energy for that. I don't want to waste my time playing administrative ping pong with Mary Harney and her merry band of HSE muppets.

I am starting this year on a positive note, I'm still buoyed up by our first ever healthy family Christmas. I refuse to be drawn into meaningless paper chases with idiots. Tempted though I am, to launch in, all guns blazing, it's a long year ahead and I have had 5 long years behind me.

So in the interest of sticking to my fresh new year's resolutions, I'm changing the way I react and I'm taking a break. I hope to return renewed, refreshed, recycled and recharged. I will be busy smelling the roses and hoping like hell, I don't revert, regress and react!

Yours in peace and harmony.....
Cheers
Ann