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.

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