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.


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?


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?


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.