This Place is Crack-a-Lackin!

Dear Galway Dive Club,

I took Boy Wonder for his routine post transplant check up in the Renal Clinic in Temple St. last Thursday. Although word had reached us that Olive, the play specialist, had transformed the clinic waiting area into a jungle, nothing could have prepared us for the gasp of delight from our little man as he rounded the corner. His eyes lit up and he stood rooted to the spot, momentarily speechless, until he turned slowly and announced to the assembled staff and kids that this place is crack-a-lackin'! High praise indeed from a very discerning young man who, in his short 6 years has seen the inside of most of the Paediatric facilities on this island, and some other islands too!

This magical transformation was entirely financed by the sale of your beautiful calendars. I was incredibly moved by the fact that a group of people who had probably never even been to Temple St., contributed their time and energy into raising money to enhance the lives of kids like our Boy Wonder. For kids with renal disease, frequent hospital visits are an all-too necessary part of their childhood. For parents, having a joyous and welcoming hospital environment lifts our spirits at a time when they in danger of being quenched.

Please know that the money you raised has already made a very important difference in the lives of the kids and staff of the hospital and will continue to do so for many years to come. Take pride in the fact that your efforts will be the ingredient that will help a scared child overcome the worry of an impending blood test or provide a frazzled parent with a welcome distraction from the drudgery of dialysis.

Thank you for thinking of us, our tough journey has been eased by your concern.

Wishing you good luck and awesome diving!

Cheers,

Ann

Late and Lame

The HSE have now confirmed the shocking total of 37 children who have died while in the care of the state, 18 of whom died of 'unnatural causes'. We wonder how this can happen and why nobody has been talking about it. Let me give you a little insight into why these appalling statistics do not surprise me.

As you all are sick of hearing - in July 2008 boy wonder was referred to a speech therapist employed by Enable Ireland; a HSE funded organisation charged with the care of children with a physical disability. In the words of the Attorney General of the State of California, this particular therapist was ' a threat to public safety'. The Children First officer charged with the implementation of child protection guidelines within the HSE West issued a report in September 2008 stating that by referring my child to this therapist, Enable Ireland were in breach of these guidelines. It is almost two years since that report - and almost a year since I had my son's services transferred to another service provider. In all that time I had no contact from Enable Ireland, until a letter arrived last week from the medical director who is a consultant paediatrician.

This is what it said:

I would be very pleased to discuss Rory with you at a time that is convenient.

I know that you had a number of concerns about Rory and the Enable Ireland services and would wish to address these with you.

Best Wishes etc etc.

Two years after such a serious incident I get this kind of nonsensical response. And the icing on the cake: both my name and address were written incorrectly.

Now tell me, would you bother meeting a muppet like this?

Cheers,

Ann

More Munchies Mr. Mozart

Rory's been on a steady diet of Mozart and solid food lately. Yes, your eyes do not deceive you, I said solid food, well incredibly mushy, puréed solid food, but food to be ingested by the mouth, so technically it's solid OK? Are these connected I hear you ask, who knows? They have certainly coincided and we have noticed Mr. Mozart working more than mere musical magic with boy wonder in the past so draw your own conclusions.

So here's the deal, boy wonder recently completed a three-week intensive listening therapy programme with an amazing speech therapist who worked with him some years ago when he was known as tiny tot wonder. At that stage he was still sans kidney and hadn't even learned to walk, but he was covering some ground at high speed on his be-nappied rear end - leaving miles of high gloss shining floors in his wake. We even considered hiring him out to contract cleaning companies such were the lean-mean-polishing-machine like characteristics of his developmentally-delayed derrière.

But I digress, he was well shy of the 10kg body weight required to even be considered for a transplant and since he had no urine output his intake was severely restricted to 450ml per day. A mere 'wee dram' in drinking terms. We were desperate to get him to eat so we could beef him up with some solid calories. A course of Therapeutic Listening was prescribed - it sounded non-invasive and pleasant and well, we were running out of options so we gave it a try. The effects were astonishing; within weeks he had been weened off his anti-hypertension medication and was as mellow as a Californian surf dude on a sunny day.

We had tried to do the intensive LIFT programme a few times since the transplant but there was always some impediment, a tummy bug, a hospital admission or just general meltdown.So, by a series of serendipitous encounters, all far too complicated to go into, we found ourselves at the Listening Therapy Centre in Galway in mid-April.It was one of those extraordinary cases of the very right place at the very right time. Rory had two hours of Mozart five days a week for three weeks, during which time, with the supervision of our Temple St dietitian we cut back on his liquid calories.

At this time he was eating a Petit Filou yogurt daily at school but still refusing point-blank to open his mouth for food at home. The listening therapist felt it would be imperative to widen the range of locations in which he agreed to eat, home being the last mountain to climb. Within two days, he was eating during his therapy sessions and by the end of the first week aided by bare-faced bribery and without too much protest he tasted food at home.

We have now arrived at the stage where he is eating a full jar of baby food at school in the morning and a range of puréed fruit and veg in the evenings at home. The bribery has radically diminished and the protests have all but disappeared. Even as I type I have to look twice at that last sentence, pinch myself and swear I'm not making this up. Suddenly our horizons have been utterly transformed, the tantalizing thoughts of family mealtimes, even a restaurant outing are flagrantly stalking my day dreams without fear of ridicule.

I think we can officially claim this as progress!

Cheers,

Ann

Tursday 20th update:

This must be our week - our nurses have apparently been reinstated. We can't be sure because of course we haven't been told, but it appears the nurses have been told to turn up - when and for how long? Well we'll just have to wait and see won't we. Obviously we will be the last to know, as such information is highly sensitive and probably top secret... so, if anyone asks, you didn't hear it from me.

Shush!

Words from the Western Front

I've just watched the BBC 2 programme on Great Ormond Street Children's Hostpital Renal Unit. I had forgotten how hard it was when Boy Wonder was a tiny baby. I had blocked out all those life and death moments, the meetings in those tiny rooms with medical teams, the surgeries, the ventilation. I had almost forgotten, shame on me, that I have the extraordinary good fortune to share my life with a miracle.

I was so caught up in a mind-numbing stateless stand-off with the hard-hearted entity with the wonderfully ironic moniker: 'The HSE Primary Continuing and Community Care Unit'. They nearly took my sense of wonder away and more fool me, I nearly let them.

Cheers,

Ann

To Win Just Once

It's been a rough week. Community Don't Care are battering us yet again. I'm tired. I'm sleep deprived. I'm fed up and really not very user friendly at the moment. My lifeline has been cut. One night a week we had a nurse look after Rory. It meant a full night's sleep. A glass of wine. A life. Three weeks ago, the nurses stopped coming, just like that. No word. No communication, nothing. The HSE informed the nurses their services were no longer needed. Nobody called us. Nobody asked if Rory's situation had changed. Nothing.

I know I need to get my fighting boots on but my soul is tired. I'm battle worn and low on victories. I'm out of words so I'll let this song say it, while I re-charge my flat battery and dust off my flak jacket.

Cheers,

Ann

Organ Donor Awareness Week 27 March - 3 April 2010

Last year 90 families, who were forced to say a final farewell to their loved ones, made the ultimate act of extraordinary compassion by agreeing to organ donation. These 90 grieving families' decisions saved the lives of 243 people in 2009.

Spread around the country there are now 172 people with new kidneys, who no longer have their lives on hold because of their dependence on dialysis. They are currently busy planning holidays, returning to work or study, maybe even running after grandchildren: activities which would have been unthinkable for them in 2008. There are a further 64 people who received the gift of a new liver; 11 were given new hearts and 5 more are breathing easily for the first time with new lungs; 8 others have thrown away their insulin supplies because of the magical arrival of a new pancreas.

Our friends in the amazing transplant team Beaumont hospital, with a level of productivity possibly unique in the Irish healthcare system, have raised their number of kidney transplants from 146 in 2008 to a new annual record of 176 in 2009. The HSE in its wisdom, has penalised this success by not increasing the budget to meet consequent strain on existing resources. As a result, the team were forced to export two donated kidneys and a pancreas to the UK transplant system because there were no available beds for the prospective recipients in Beaumont.

To quote the late Frank Deasy: Organ donation contains a possibility almost unique in modern life. We, the general public, can make a difference. It's not like the economy, the climate or Afghanistan. ...Your consent is the missing element in the equation of saving lives. That's pretty extraordinary.

Just in case you need further encouragement; this is what a successful kidney transplant looks like:

Donor Cards are available from your local pharmacy or simply free text the word DONOR to 50050. When you get your card, please remember to discuss the issue of organ donation with your family and make them aware of your wishes.

Cheers,

Ann

The loss of a Healing Heart

We lost a good friend this weekend. A hopeless romantic, whose heart balanced proudly on his (always well groomed) sleeve. That heart worked overtime for 46 magical years: loving, laughing, comforting until it finally wore out from sheer excess of love and kindness. This loss will leave an open wound in the heart of his family but also in a global community of friends.

Farewell - safe journey to wherever it is you're going. If we could beg one more favour of your healing heart, it would be to ask you to help those left behind to learn to live without you.

Although the world is so much darker for your passing, it is all the brighter because you have lived.

Cheers,

Ann