Sunday, 22 April 2012

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!



Anonymous said...

As someone in the same boat who has been put off in the same way and heard the same shall we say put offs and delay tatics and inacurate messages i admire your tanicity. i havent been as fortunate to get the second opinon. please let me know how you eventually did it. my child was cruelly peanilised for wanting answers. a moter in the very same boat.

Anonymous said...

Hi there,
Bonjour à la petite tribu.

Did Rory like his trip to London? Funny red buses and other strange things like that...

I'm back from my own London school trip, quite exhausting but great time anyway...

Got news from Mags( email)who might come around bordeaux in summer with Mercedes?

Je pense à toi ma pucette et tiens bon ... you're still my mighty hero of a mother and friend.

aka "la" Véro, "la capitale"
Send all my love to kids & husband of yours

AnnB said...

@ Véro - Merci mille fois - il parait que tu as pas mal d'ennuies toi meme en ce moment - il faut qu'on se téléphone - bisous baveux de toute la tribu!


@ Anonymous - so sorry to hear you are in the same boat - I know only too well how stressful it can be. We managed a second opinion because we fought hard - it was very intimidating at times but we stuck with it. Also fortunately we had a place to stay in London and we were in a position to come up with the money to pay for the trip and the consultations.
We have round two ahead of us but we're ready for battle. keep fighting it's hard but there are good people who will help - we have been lucky to meet so many along the way.
Best wishes with your fight and let us know how you get on.

All the best - Ann

Linda said...

You are an amazing beacon of resilience and strength Anne. Hold tight and you will get there using all means at your disposal. You are an inspiration to anyone considering ever giving up hope on anything, though I can't imagine it is easy in any way. Please let me know if you need to lobby support at any stage. Linda

Annb said...

Thank you so much Linda - I really appreciate your support. xx