Working My Way Through The Bile

Hi All,

I'm still, as the Detroit Spinners would put it, working my way through the bile! Fighting for your child's rights is extremely difficult. It is almost impossible to convey the level of frustration, outrage, despair and downright hopelessness that can fell you at any moment of any day. Every parent naturally wants the best for their child, what's best is a movable bar that is raised or lowered according to our perception of their individual potential, but that bar is always firmly set at fulfilling that potential. Our greatest fears are that we, in some way, could hold them back. To have your child held back by a bloody minded bureaucray is the cruelist form of torture.

The endless lists that trundle on for years and years without any sign of advancement, the false starts, the job's worth officials who just rubber stamp files and move on, they are all stacked against you. It can become all consuming and thereby damage you and the very child you are trying to protect. The mandarins hold all the aces while you jump through hoops trying painfully to flex your brain into the way they may think, in a vain attempt to second guess their next move. It's exhausting. I often wonder about how we put up with such a fiasco of a health service. Think about it, what other service do we continually pay for, even if we don't need it, and then when we are unfortunate enough to need to access it we are denied a service? Not even the most dodgy insurance policy would get away with a blank, no pay out, on all claims. Yet we have no contract, no small print, no redress. The people who control the purse strings are not medics, they can't determine the urgency of any need other than the most blunt budgetary ones. They are faceless, nameless and completely unaccountable to anyone. We all ring our hands and complain but nothing changes. We ring Joe Duffy and get the nation talking but nothing changes, it's quite extraordinary how such a royal mess is allowed to continue.

I've been trying to work out the cost of not giving Rory the service he so desperately requires, and it is the stuff of a serious migraine. If Rory had learned to eat at the normal age, i.e. 4 to 6 months, he would have gained weight much faster and the fact that while on dialysis he was restricted to an intake of only 450ml per day would not have been such an issue. Eating and gaining weight would have seen him reach the optimal transplant weight of 10kg much sooner, lets say for arguments sake a whole year earlier. So that automatically means one year less on dialysis at a cost of, according to latest estimates from the Irish Kidney Association, 150,000 euro per annum. This doesn't include transport from Galway to Dublin 3 days a week for that extra 52 weeks, or the nursing escort two days a week.

Lets take a stab at a very rough estimation of the cost, shall we?

• 1 year extra on dialysis 150,000
• Transport 52 wks @ 600 per wk 31,200
• Nursing Escort 52 wks @ 500 per wk 26,000
• Epo and other medication required
• for dialysis patients, est 1000 per month 12,000
• Specialised feed 150 per week 7,800
• Feeding pumps and Ng tubes est 2,000
• Feeding pump feed bags 500 per month 6,000
• Extra hospital admissions lets say 6 per yr
• @ 4,000 a go 24,000

Rough total 259,000

Annual salary for a speech therapist,
rough estimate 70,000

So assuming we were only held up by one year on dialysis, it could have been more, the difference between hiring a speech therapist , who of course would have treated many other kids as well as Rory is a cool 183,000! And we wonder where the money is going!!! This is a very rough calculation but it warrants closer examination by someone in possession of all the exact costings.

Bear in mind folks that Rory's non eating habit is still costing, even with the kidney transplant, had 70,000 euro been spent in 2003, that would have all stopped at the end of dialysis but instead it goes on and on and on!

This is a crude economic exercise, I wouldn't even know where to begin to try and quantify the quality of life issues or indeed how much it will cost in multi disciplinary therapy as we play catch up on Rory's developmental disorder. Can anyone offer any insight into the logic that is at play here, because I just don't get it!

The similarities with a certain TV commercial spring to mind:

Having your child fulfill their potential? Priceless, for everything else there's the HSE master card!

Cheers,
Ann

Battle Weary

Hi All,


Greetings yet again from the Western Frontier - where right now, that particular moniker seems much more than a mere geographical term. When it comes to primary health care, this really is the wild west! Good rearing and a convent school education have prevented me from blogging in the last week, such was my fury, that I couldn't come up with a polite way of expressing myself, so I figured that silence was a much wiser course of action. To be honest, I haven't digested the bile enough yet to even go into it now, so you will have to bear with me for another few days while I compose myself enough to write about the last week in a civilized manner.

Rory is doing very well though, which, as always, acts as a beacon of hope in all this madness. His engagement and communication skills are really coming on and he even mastered the magic 'please' word this week. His 'thank you' skills still need some work but hey, it's a start. On the food front, nothing as dramatic as last week's Rice Krispie to report, but he did lick some creamy goat's cheese off my finger on Friday. At first I thought it was a once off fluke, but he came back for seconds and thirds when they were offered! On Thursday, he joined us for dinner again, and had great fun making circles out of his green beans, progressing onto robbing his sister's stash when his own were too mangled to comply with his circular logic. To see him handle food with such ease almost takes my breath away, it's so beautifully normal. This fledgling relationship with food seems to be very much based on the humour he's in at the time it's offered, as foods bravely tested today could be flatly refused tomorrow. It's very reassuring to see that our trust in him setting the pace is beginning to show results. We will gradually build his confidence in his ability to eat if we let him do it in his own good time.

The amazing speech therapist we are seeing privately has arranged for a full evaluation for Rory with a visiting American expert in Dublin on May 11th. It took me all of Friday morning just to fill in the assessment form, the level of detail required almost fried my poor unfortunate brain. I felt like such a bad mother when milestones like the first smile, tooth, and words were not recalled with the requisite accuracy! It will be very interesting to finally get him seen by a real bone fide expert who deals with kids like Rory all the time. Hopefully he won't prove to be the honour's paper to her also! This whole search for integrated therapy has been such a strange stage in our journey with Rory. Up until now, we were used to being part of an extremely professional team who all communicated with each other in an intelligent and rational fashion. They were task orientated and when problems arose, they consulted with equally learned colleagues, all the while keeping Rory's best interests at the forefront of their motivation. I am still at a loss to understand why this can't happen in a community care setting, where rear end covering is paramount and patient care is of little consequence.

The struggle continues for yet another week, I will endeavour to keep the faith.

Cheers,
Ann

Are You Ready Boots?

Hi All,

As you can see the boots arrived - and Rory loves them! Already I can see an improvement in his balance and he is running with so much more confidence. We've had a great a great couple of weeks, I still can't believe that we haven't been in Temple St since the 27th of March, it's a new record for us. Rory is back there tomorrow for blood tests, the first that will have to be taken without his central line. Poor little man he hasn't yet realised that they will have to stick a needle in him from now on to get the blood samples required, he's not going to be pleased when he figures that one out!

The plod continues with the Needs Assessment appointments, at least now we can stamp in and make lots of noise with the new boots! I won't bore you with the latest round of brain throbbing, eye twitching encounters, but suffice it to say we are remaining polite in the face of some very challenging situations!

Rory is being his usual charming self, he now modestly proclaims to anyone who will listen that he is 'Fantastic" - he was never one for the understatement, our Rory.
He has also recently developed an interest in Rice Krispies and has now taken to pouring the contents of the box onto the kitchen table. He sometimes likes to add milk to his Krispie mountain, then sticks a spoon in the middle, and puts it to his lips! In the world of an orally averse little boy, this is the feeding equivalent of the Good Friday Agreement! In a move as historic as, say Ian Paisley admitting he quite fancies a decade of the Rosary of an evening, Rory actually picked up a single Rice Krispie on Saturday and put it into his mouth! We watched, while trying desperately to pretend we weren't looking, we waited for the gag, the spit and the violent ejection, but nothing happened. The Krispie simply moved round in his mouth and then went the way a krispie should go, south to his tummy! I'm surprised it wasn't the top story on Sky news!

So lets all hope and pray that this is the start of many more snap crackle and pop moments in this young man's already most eventful life!

Cheers,
Ann

Suffering the System

Hi All,

Please excuse another lengthy silence - I know some of you worry when there is no news. No need; we are all fine and still talking to each other! It's an extremely busy time getting to all of these appointments for Rory's disability needs assessment. It is also probably the most stressful experience to date for me, in all the years we have been dealing with Rory's health needs. The process in painfully slow, it doesn't seem to follow any chronological order. I don't feel like we are systematically working our way through any issues here, what's assessed this week is absolutely the same as what was assessed last week and there is certainly no joined up thinking going on between those who are doing the assessing. I even have to endure questions from one therapist asking me about the status of assessment being carried out by one of their colleagues, as clearly no one seems to be talking to anyone here. It's like dealing with the Fawlty Towers approach to child therapy!

I feel completely deflated by the whole ordeal, I can't believe I have been fighting so long to be met with this kind of "make it up as we go along "type of approach to treating Rory's developmental delay. Naturally, I've been informing myself on what happens elsewhere worldwide in these situations, and it is pretty much universally accepted that kids with a history like Rory's need a multi disciplinary team approach where everyone sings from the same hymn sheet. Unfortunately, this is a cultural impossibility within the Irish community health care system, where the mission statement is never to let the right hand know what the left is up to, and most importantly never put patient care before the preservation of the system. The system is an immovable feast of fear, frustration and frantic red tape where the passing the buck is an art form and fudging the issue is the key to survival. It is a constant source of amazement to me how these people actually manage to get up in the morning.

I will continue this process to the bitter end, because a) the end is in sight, and b) I have no choice, we can't move forward without a statement of need. This prized piece of paper will be complete by the end of May - by which time I will be already incarcerated in a home for the mentally bewildered! Meanwhile we continue to work on Rory's oral aversion ourselves with the help of an amazing Speech Therapist who we see privately. I dread to think of where Rory would be now if we hadn't gone down this route. We are seeing improvements everyday, he is willing to challenge himself more and more, becoming braver with each passing day. Today he sat with us for a meal, he didn't eat anything but he was happy to play with our cutlery and didn't have a complete melt down when he spilled spaghetti on his jumper. He quietly picked it off and dropped it in his dish. Seeing him able to actually handle food without becoming stressed gives us great hope.

I am convinced that Rory's aversion is rooted in issues of trust and control. He has never felt hunger, never had to engage with others to have that hunger need met. To cap it all, anything that came near his face was, at best, deeply unpleasant and at worst, downright painful. We need to work around his feeding regime, making sure his kidney gets the daily fluid allowance it requires but also allowing him time to feel hunger. Then we need to educate him that food is good and not something to be feared. But we have to follow his lead on this, he must choose to eat we cannot force him. He needs the support of a very experienced team to encourage him to make this most basic of life choices. I have yet to find this team.

I am optimistic for Rory's future, he will eventually make that choice, it's just so difficult when meeting his needs is such a struggle within this insane, cruel excuse we have for a health system. It shouldn't have to be this hard.

Cheers,
Ann

A Rare Speech Therapist Siting

Hi All,

Well, I'm happy to report that I now know what the local community care speech therapy department looks like. Imagine, after 4 years I was finally admitted to those hallowed halls, I even met with a speech therapist who told me she had experience treating aversive eaters!! I was stunned, amazed and even awed, as I had been led to believe that people with her skills didn't exist in this area. Mind you, her office was at the end of a stuffy corridor in a portocabin,so it is entirely possible that HSE local management had just simply forgotten she was there! Like all those letters of complaint I've written over the past 4 years, she too had been sucked up into the ether of the esoteric administration of our health service. I bet if one were to do a thorough inventory of all the corridors in all the cabins run by the HSE, all sorts of treasures would be found; a cure for cancer, cost saving measures that treated patients with dignity, orthotic shoes for the under 5's, neurologists, ambulances and even detailed directions out of Angola signed by a certain B. Cowen. It's like the flipping Narnia wardrobe in there!

Reassured that she wasn't a figment of my overactive imagination, I began yet again to detail my son's complicated history. I should really just type up a flyer about it as I have delivered that speech over 100 times so far this year alone! She responded well, took detailed notes and generally seemed to be quite sensible, a rare gift these days, in my experience. We have arranged further dates for her to continue her assessment of Rory's needs with a view to preparing his service statement by the end of May. But no, she has no idea who will be delivering the services to Rory. Rumour has it that Enable Ireland have actually offered a full time post to a Speech Therapist but no one can confirm or deny that he or she has any experience with eating aversion. So even though she herself may be the best qualified person for the job, Rory will be tied into the services of Enable Ireland even if their new speech therapist hasn't a clue how to treat him. Don't you just love a good old fashioned bureaucracy?- the mind numbing nonsense surrounds you like a comfort blanket that's been infested with fleas!

This week sees us battling a further barrage of tests, occupational therapy tomorrow, with physio and psychology following later in the week. At times I feel like the blood is quite literally being sucked from my veins by this process! On a more positive note though we did manage to go over a week without going to a hospital that's Rory's new personal best, 10 days cold turkey since his last discharge! His new found freedom has given him lots more time to get up to all sorts of mischief, like switching off the telly during the last furlong of the Grand National when all present were nervously clutching betting slips bearing the names of the first second and third contenders!! He was lucky to escape that one with his life! Transmission was restored in time for the action replay, the winnings were belatedly confirmed and then duly celebrated.

So I guess the only up date on this on going battle is watch this space for further details!

lets remember folks it's 5 months on since Rory was given a kidney from his dad and he still can't eat.

Cheers,
Ann

Small Victories

Hi All,

I'm happy to announce progress on the footwear front!! The obviously flush footwear department of our local HSE Community Care has rubber stamped the purchase of special shoes for our boy's feet! Of course now we wait, as they have to send someone out to actually buy them! I promise photos in 3D when or if they arrive. Although I can't help feeling some kind of residual survivor's guilt for those who may not have been in the inner flush circle on this round Imelda Marcos type indulgent spending! If you know anyone in that situation, still waiting for approval for shoes, please pass on our messages of support.

The other break through, is in the Speech Therapy department! Lets not get ahead of ourselves here folks, we haven't actually been given any service, but we have been given a date for an Assessment of Need. This will merely outline our urgent need for the services of a Speech Therapist, but will then refer us to yet another waiting list, due to the lack of services available in our area! Are you all still with me? We have the privilege of meeting her on Friday, I promise to report in detail on that one, it should prove very interesting.

On a much more tangibly positive note though, I'm happy to report that we are now half way through our first week in almost 4 years without setting foot inside Temple St Hospital! Imagine, our first week since Aug 04 that we have not been in Dublin, we don't quite know what to do with ourselves. This momentous milestone is due to his recent blood results being very good and also to the fact that we said goodbye to his Central Venous Catheter last Wednesday.

The Central Venous Catheter has literally been his life line since starting on haemodialysis in Sept 04. Sited in one of the veins near the heart, it is the magic piece of plastic which gave the team access to Rory's blood for dialysis. Before the transplant, the continued good function of this tube marked the miraculous bridge between life and death for Rory. It had served him very well and really without incident since it was inserted. However, we were not sorry to see it go! No room for sentimentality in this house! Kids who have these can't have baths or swim as this line must be kept dry. We're still waiting for the opinion of Rory's transplant surgeon on him being allowed to have a shower due to his unorthodox urinary plumbing works.

Rory is also back at his Montessori school two days a week. It's such a joy to watch him skip in the door with all of his classmates. He's making slow but steady progress and was even persuaded to sample some yogurt by his teacher! He spat it out before it even hit his tongue, while one of his buddies sagely pronounced that he mustn't have liked the taste! Still he tried it and he didn't vomit or gag like he used to, so I'm officially classifying that as a victory also!

It's fitting, during this Organ Donor Awareness Week, to concentrate on the little victories. If Rory's story has moved you, please consider getting a Donor Card but also make sure you discuss your wishes with your family.

Lets remember here folks, that thanks to an amazing gift from his Dad, a little boy who was born without kidneys is now running round and tasting yogurt!

Cheers,
Ann