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.

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

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

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

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

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

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