Big Victories and Small Mercies

After an agonizing wait, and many a confused phone call, I am happy to report a big bright shining light at the end of our dodgy u-bend tunnel! We've got a surgery date and we are packing our bags to go to London's Great Ormond Street Children's Hospital!

The plan is to move Boy Wonder's stoma site to iron out the kink in the pipe and improve the quality of his urine drainage, which hopefully will reduce his creatinine levels thus allowing us all to exhale once more. That's the plan - lets just keep everything crossed that it works!

While they're 'in there' - don't you just love it the way surgeons say that? 'While we're in there we'll take a look around' - you'd swear it was into your living room they were going, just to measure up for curtains like! While they're 'in there' they'll be measuring up his internal plumbing for matching fixtures and fittings with a view to a whole new interior 'look'. This 'look' will ideally include the latest in junior indoor conveniences like a new bladder!

The new bladder is a long way off but this is the first step - a bit like meeting with the architect to discuss drawing up the plans.  After their time 'in there' the team will then move on to the Ikea catalogue of internal plumbing - I'm imagining a sleek swedish affair with streamlined tubes and top-of-the-range catheters but then I've always had a thing for a well-designed interior!

So between now and the 29th of August  I will waver between relief and terror, I'm trying to keep the wheels on the wagon but I can already hear the back axel creaking. I will busy myself with preparations, logistics, lists and secondary lists - all in an effort to avoid thinking about what is actually going to happen: surgery in a new hospital, in another country. Boy Wonder has already had more surgery than I can count but it never gets any easier for me. If anything it gets harder.

I will keep my eyes on the prize and plan; that's what I do. In the meantime we have a big date with some gooey cake to celebrate a 9th birthday in style before we take off to start yet another chapter in this awfully big adventure.

Cheers,
Ann

Faith, Hope and Rory - Plumbing Part Deux

I thought I was pretty shock-proof at this stage. I thought the Irish health system had thrown all its dirty tricks at me: like when they sent Boy Wonder to a speech therapist who was considered a threat to public safety in California but kosher to work with kids in Ireland, or like the time a local HSE manager wrote to inform me of how much my son had cost her, or that whole ridiculous palaver over the shoes. Experiences like these tend to mark a person, you build up a certain amount of scar tissue leaving indelible reminders of battles waged, won and lost. While I no longer had faith, I was still in possession of some modicum of hope and I had prided myself in being fairly ready for any sucker punches that would blindside any novice. Big mistake.

It all started, innocently enough, with a letter from the UK surgeon, detailing the rarity of Boy Wonder's anatomy (see - it's not just his mammy who thinks he's special) and how that rarity coupled with the small population in our country would make it unlikely that the specialised surgical skill set here would be doing enough of this type of work to give our Boy Wonder the best chance at continence. So far so inoffensive and indeed you would be forgiven for thinking that form signing to move the surgical care to the UK could be deemed a mere formality.

No way José! The first tactic was to ignore the letter - for a whole month they ran around Crumlin hospital with their fingers in their ears shouting 'la la la can't hear you' whenever the issue was raised. Boy Wonder's re-admission to hospital last week with a dangerous creatinine level forced the situation to a head.  His condition was moving from chronic to acute; action had to be taken. The nephrology team in Temple St. called a meeting to finalise the paper work for the E112 application which would get us on a plane to London as soon as possible, except it didn't work out like that.

The dragons huffed and puffed and threatened to blow my house down. There was no way a surgeon was going to sign a form to say he couldn't do a rare procedure. A 'work-around' fudge solution to filling out the form was suggested that had more loopholes than your average kitchen sieve. I naturally refused to be party to any application that didn't give my son the best chance. Eventually common sense and very scary blood results prevailed and a wording was found that would allow the egos to land, but it did leave me wondering how the Hippocratic Oath and the best interests of the child had been completely jettisoned in this cesspit of political posturing.

I've had a week to process what happened and to be honest I'm none the wiser. The scar tissues of past battles have just split right open and the wounds are weeping uncontrollably. I have medicated myself with industrial quantities of carbohydrates and wine, my usual go-to solutions in such cases, it has taken higher doses but it seems to be settling.

Now all I have to do is steel myself to leave the state to have a whole new team in a different hospital carry out surgery on my son.

'Simples' she says reaching for yet another slice of cake and a robust Rioja!

Cheers,
Ann

Plumbing Pitfalls Can Include Politics and Pit bulls!

Once again I find myself stuck in that no-man's land that stretches between the best interest of my child and the trenches of the HSE troops. Boy Wonder's plumbing issues have been more than well documented here so I'll pick up where I last left off.

The kink in Boy Wonder's tube has caused a steady up-ward crawl of his creatinine levels and an equally steady dilation of his transplanted ureter; hardly an ideal situation for an eight year old with a second-hand kidney. So our renal team in Temple St. figured it was time to involve the Urology team in Crumlin Hospital. Now here's another classic HSE-ism that my logical brain is at a loss to comprehend - why doesn't the national renal centre in Temple St. have a urology department under the same roof? Why do all patients have to schlep across the city to the attend the crumbling circus that is Crumlin Hospital?

Our attempts at getting an appointment were stymied at every turn with a fire breathing dragon who answered our calls in a manner that should only be reserved for cold-calling, PC-virus-scan sales people, who always mange to call as you're just putting the first forkful of dinner to your lips. Now correct me if I'm mistaken here, I can't understand why we represented such an inconvenience to this woman as I imagine the job description of a secretary in a paediatric hospital would include taking calls from parents wishing to make appointments to see specialists.  As our appointments were repeatedly scheduled and then cancelled over the course of ten long months, Boy Wonder's creatinine climbed and his ureter dilated in direct proportion to his mother's rising blood pressure and ire.

We eventually breached the moat and silenced the dragon back in November. Our meeting was as confusing as it was infuriating. We were told that since Boy Wonder's ureter had dilated beyond the point where it was considered safe to plumb into a bladder fashioned from his bowel; the agreed long term surgical plan for our boy was no longer possible. As our only option of continence for our 'wee' man slipped through our fingers, I was naturally proper pissed off! Had we not just spent the last year trying to get to see this man who knew the ureter was dilating and the clock was ticking?

So I did what any mother in this situation would do: I got thick - very thick in fact and demanded a second opinion. Last week, amid dire warnings of even more dire consequences if we proceeded with our legal right to a second opinion, we finally made it inside the doors of the hallowed ground of London's Great Ormond Street Children's Hospital.

Thanks to that consultation, we are now the proud owners of some different options for our boy, but there's a hitch (isn't there always?). We need the dragons and Pit bulls at the gates of Crumlin to tell the HSE grey men in suits that the team in London are right before we can proceed! Now what are the chances of that happening anytime soon?

Answers on a postcard please!

Cheers,
Annb

Old Wounds And New Wonders

Did I ever mention that Our Lady's Hospital for Sick Children in Crumlin gives me a severe debilitating does of the wobbles? Since it has been the location for some of the darkest days of my life; I try to avoid going there at all costs. My avoidance tactics ran out last Thursday when the elastic on my get out of Crumlin chord snapped. A minor problem with boy wonder needed to be seen by a urologist. The urologist in charge of junior's plumbing second fix, is based in Crumlin, so, reluctantly, we returned.

The other kidney said he felt like he was experiencing post traumatic shock disorder. I knew immediately what he meant. The first year of Rory's life is a blur for me, the stress and trauma was so intense that I just prefer to park it in the past where it belongs. However, no matter how hard we try to restrain it, that old skeleton can't help giving the cupboard door a really good rattle every now and again. Lest we get ahead of ourselves!

I find it very hard to distill the essence of my aversion to Crumlin, it's a volatile cocktail of fear, rage and despair. The staff were wonderful, warm, professional and caring, the conditions on the other hand, were somewhat akin to those of a Romanian Orphanage circa 1988. These pictures will give you a taste of how we lived for three months while we learned how to dialyse our new kidneyless baby:

Back in 2003, there was no dedicated renal ward in Crumlin so we were housed in a general baby ward and exposed to all those baby infections that rear their snotty little heads every winter. Rory picked up everything that was going; many a weird and wonderful virus. One of those nasty doses landed him in back in ICU on a ventilator when he was about 7 months old. Now that was a dark day.

For respite, we had the parents' accommodation. Again it was warm and welcoming but it hadn't been decorated since the 1950's. Anytime I stayed there, I couldn't help feeling like I was sleeping in the middle of a John McGahern novel. Suffice it to say the surroundings were not conducive to the recharging of flat parental batteries. I shuffled round that hospital like a zombie for months, until one day I was, quite literally, shocked back into the land of the living. 120 volts it was, delivered with a flash as I plugged in the dialysis machine to this socket:

That was the day I got my fight back. The shock lifted me off the floor and out of my torpor. I got angry, proper red rage spots in front of the eyes, angry. That ward has since been fully refurbished and there is now a dedicated Renal ward in Crumlin hospital. Maybe someone did actually read all those letters I wrote.

I listened to the stories of organ donation on Liveline during the week, and was yet again reminded of our extraordinary good fortune.

As I type, boy wonder practices how to burp on demand, just like any other six year old boy, delighted at his new found skill.

Cheers,

Ann & Burping Boy Wonder!