Wednesday, 13 November 2013

Six Years Ago Today

This time six years ago we were watching the first doses of anti-rejection drugs being drawn up; an unusual sight going into small boy with no kidneys. It jolted me into the reality of what was actually happening. Within a matter of hours he was going to be in a possession of a kidney that he could possibly reject. Like an unwanted Christmas gift, or a previously-held faith, his body could simply tire of his Dad's left kidney and decide their new tissue match-made-in-heaven was a non runner. It was a classic rush of too much information, so I decided to file that in the 'things to worry about next week' file while I continued my struggle to appear like a functioning human being as the trip to theatre loomed large. Six years on, I still keep that thought in the 'don't go there' file.

I don't go back to that day very often, except on each November 13, uncanny that this month of remembrance should hold such personal resonances in our home. This year has been a very good one; now tube-free, our Boy Wonder is making huge progress and settling into his new skills of peeing and eating like a pro. The journey has been eventful, but I feel we're moving into a new phase. We're more open to the world, because now with six kidney years behind us, we no longer feel like we are living in a separate realm.

We are here because a group of people in Temple Street Children's Hospital are committed to excellence, and so in keeping with our now-familiar tradition, we will gather this evening while the two kidneys raise a toast to that renal dream team. We will also remember donor families everywhere, who  at a time when their grief made even breathing in and out seem almost impossible, managed to make the gift of life.

Ever grateful for our good fortune, I'll struggle to remain dry-eyed while I luxuriate in the beauty of now.


Saturday, 29 June 2013

A Toast To Temple Street.

Today we celebrated the 10th anniversary of the first kidney transplant surgery in Temple Street Children's hospital. I feel so honoured to be part of this most extraordinary adventure!
I was asked to talk about my experience of transplantation from a parent's perspective. This is what I said:

Our story began almost ten years ago with the dramatic arrival of our son Rory. I say dramatic because Rory in his wisdom, managed somehow to arrive without any kidneys. And as Oscar Wilde once said: to loose one may be regarded as misfortune, to loose both looks like carelessness.

Thrust as we were into the weird and wonderful world of renal absence, we began a vertical learning curve that saw us training to tell our calcium inhibitors from our creatinine. To anyone who hasn’t experienced life with a child on dialysis, your entire family is effectively placed on pause mode. We struggled with the art of deferral, while we put holidays on hold, scaled down birthday celebrations, missed family weddings, chose between Christmas Eve or St. Stephen’s Day for dialysis and generally just, well, waited.

Sometimes we had to wait for his temperature to come down, sometimes for the wheezy patch to pass but more often we were just waiting for him to simply gain weight. The magic transplant target of 10kg invaded our every waking hour; while we celebrated each gram gained and mourned each one lost.

When we hit that target, our fixation moved from waiting by the weighing scales to waiting by the phone. Life on the transplant list brings a whole new quality to the art of waiting: it’s a potent mix of impatience and fear. As adults we can reason with this we can adjust, but for our kids it is a very big ask. They only get one childhood it’s hard to ask them to spend it waiting.

Transplantation has re-pressed the play button on our lives; we now bask in the brilliance of everyday normal, thinking nothing of sleepovers in granny’s, booking holidays or taking trips to the swimming pool - things that would have previously seemed as unattainable as a weekend mini-break on Mars.

Although this waiting was excruciating, we were blessed with some wonderful company: the renal team in Temple St. They hung in there with us, lightened our days with random acts of kindness that left us lost for words. For all the cups of tea and slices of hot buttery toast, the phone calls just to see how we were getting on, the birthday cakes, the gentle but firm cop-yourself-on pep talks and the belly laughs, we thank you. Not only have you helped us through our pause mode, you have also taken us out into play mode again. At a time when working in the Irish health system can best be described as a tough gig, you have continued to deliver the type of excellent care that changes lives. We salute your exemplary professionalism and your extraordinary humanity.

They say it takes a village to raise a child, I am profoundly grateful that our children had the great good fortune to find themselves in the vibrant, caring village that is Temple St Children’s hospital.

But just as it takes a village to raise a child, it takes a society to run a transplant programme; we must all play our part in reducing the waiting time for the children and families who are currently in pause mode.

Friday, 5 April 2013

Free Falling into Normal

For over nine years, I have craved normal so much I could almost taste it, but in the elasticity of that term I now fear I may have wished beyond the stretch. Normal takes some adjustment and I don't know if I can get enough pliability back into the elastic band holding my life to allow me dangle slowly into a soft landing on normal soil.

My days were measured in 60ml syringe-fills of fluid, our mealtimes a liquid formula of complete nutrition and although stressful, we had become accustomed to its rhythm. The fasting pre and post anti-rejection medication was followed by the feasting of night feed pump. Hunger never stalked our house, it never got a chance, locked out as it was by the security sentinel of naso-gastric tube feeding.

It's not like we haven't prepared for this day, it's not like we haven't worked hard, throwing every form of sensory oral-motor therapy at it. It's not like we haven't seen 'ologists from here to kingdom come. For years we chipped at the intractable monolith of oral aversion with bite blocks, chewy tubes and oral face massagers. We pleaded, we begged, we threatened and we bribed and still he said no.

I don't know what turned it round but somewhere around the end of last year, I sensed he was ready, don't ask me how but I just knew. At this stage in my combat training at extreme parenting when I see a chink in the anti-eating wall - I become like a heat-seeking missile and trow enough artillery to sink a North Korean despot at the problem! And Like any North Korean despot, my Boy Wonder played the brinkmanship card all the way to seconds before the deadline then acquiesced with his customary charm.

The tube came out a week ago, he is eating like a horse I'm working on this new normal life of ours but some how I feel bereft. I don't know what to do with my time, I'm not very good at normal and I wonder if maybe there is a Fás course for this kind of thing. Could I be taught the skills of normal life? I also need a maternal NCT - my last one was post transplant. I'm sure it happens to many maternal front liners - those who have been on red alert for so long with their sick children that they can't turn down the thermostat on their flight-or-fight radar. My call to arms is all too ever present and like some now defunct post-peace-treaty freedom fighter, I'm finding decommissioning a challenge.

As always Boy Wonder has adapted with ease, asking for food albeit puréed, complaining of hunger and I am so shocked by the instinctual nature of his demands that I have to ask him to repeat his request.

This will be a beautiful adjustment once I allow myself to lay down my weapons and embrace yet another, glorious transplant dividend: normal eating by a hungry nine-year-old boy.

What does one do when la lucha no continua?


Thursday, 28 March 2013

Ta Dah!

This is Boy Wonder on his way into his transplant clinic in Temple St. Hospital on Tuesday

Ta Dah! - And this is Boy Wonder having breakfast at home the day after!

Anyone spot the difference?

Answers on a postcard please!

Just this once - I am completely lost for words!


Thursday, 28 February 2013

Don't Worry Be Happy! (she said hopefully)

As you can see the tube weaning is still going well - he's down from a previous night feed of 800ml to a mere 500ml and is beginning to eat me out of house and home. It's such a joy to hear him ask for food, it still makes my heart flutter. I'm working slowly to make sure he is very comfortable but if I'm being really honest, I probably need the comfort blanket of that tube more than him. It's taking about two weeks to reduce each 100ml; there's a lot to consider apart from the mere calorie intake. We have to maintain his fluid balance which is essential for his kidney, but also we don't want to mess with the absorption of his anti-rejection meds. It's all a bit of a numbers game really.

My next task is to practice getting the medication into him orally - I'll start by squirting the same volume of water into his mouth and then try to persuade him to drink 60 ml water chaser to flush it down. That should be fun! I see a whole new level of bribery on the horizon, this could get expensive!

My current major problem is trying not to lose the run of myself - I can't seem to stay in the moment - I keep worrying about three steps ahead of each stage we meet. It seems so counter intuitive for someone who had to stop planning for so long. Now I'm fretting about calorie intake on 400ml of liquid feed, I wake up a 4am to have a right good worry about how much double cream I'm sliding into his food, is that the reason for his constant runny nose? If I reduce the dairy intake - how will I beef up calories without adding volume? What happens at our next clinic visit in four weeks' time when he's due for a tube change? Do we change it or just bite the bullet? I've even started worrying about next year which is a complete waste of time and an alien concept to me.

Of course then, in a blinding flash of the bleeding obvious, it dawns on me: I have been so privileged being forced to live each day as it came with Boy Wonder that the concept of his future is something I have yet to learn to handle. It's all so tantalizingly close this life after tube, I'm worried I may not be up to the job. Boy Wonder, on the other hand will take to it like a duck to water.

There is a lesson in there - if I could cop on and learn it!


Friday, 25 January 2013

The Sweet, Sweet Taste of Persistence

After nine long years of being fed by a naso-gastric tube, (a world-record in paediatric medicine I'd bet) this week we start the long process of weaning Boy Wonder off his feeding tube.

I can't quite believe I am about to write this post! The whole raison d’être of this blog seems to finally be materialising before my very eyes. Like every 'normal' milestone we have met along the way, this one too threatens to overwhelm me by the sheer beauty of it's very bland, quotidian nature. At the risk of becoming a complete cliché; I do have to repeat that for me the wonder has been in the ordinary - when you live outside of 'normal' the chink is never too wide, so the wonder rushes in when you least expect it.

We have seen 'ologists, we've seen specialists, we've tried bribery, pleading, protests, threats and every other trick in our parenting arsenal; all have failed. I stopped trying to push the agenda about two years ago, realising then that my Boy was blessed with a will of steel; even my legendary pig-headedness was no match for this young man who had confounded all odds. I put myself in his shoes and thought what's in it for him? Food is terrifying, he has never learnt to eat, he has never known hunger suffering as he did from hormonal anorexia, due to his lack of kidneys. Even when transplanted with his Dad's  second hand cast off, although he felt hunger - he didn't know what it was nor what to do about it.  The most basic human driving force was unknown to him. The dilemma was how to teach it if he refused, through sheer abject terror, to put food in his mouth.

This was a major brick wall for his parents, we both come from a long line of great eaters on both sides - in other words we love our food. Personally I love thinking about it, talking about it, cooking it and more recently I've taken to growing it - all in the hope of waking up this food gene that Mr Mendel swore to me through school biology texts he should have inherited.

Thanks to the work of many great people not least a gifted Special Needs Assistant at school, Boy Wonder will now eat small amounts of puréed food which we then supplement with 800ml of complete nutrition formula via feeding pump overnight.  We have been working steadily over the last five years with an American Oral Motor Specialist to try to break down his oral aversion. Finally a Skype conference with her last week proved so successful that she set our weaning plan in motion.

This week he has reduced his overnight intake by 100 ml and guess what? He's hungry and he knows it.

And now starts another miracle on our road to three meals a day, watch this space ...