Back To The Start... And Back Under The Knife
It's easy to package Rory's medical story into a little box of Sepsis/Meningitis/Amputation - all the big scary words that are actually just after-effects.
Not very often do we refer back to the problem that caused of all this in the first place; a blocked valve in his urology system. And it's that particular area that has our attention at the moment.
As a reminder, or for those who have only recently joined the blog; in the days following Rory's initial admission to intensive care back in July 2020, it was discovered that there was a problem with his ureter. The ureter is the tube that carries urine from the kidney to the bladder. Instead of looking like a thin tube as per the diagram below, it was showing up on scans to appear more like an intestine; swollen, bulging and twisted round on itself, struggling for space in his little body. The reason; the valve at the end of the ureter, where the tube meets the bladder, was blocked. It was a simple birth defect, pure chance, nothing preventable or predictable. For the first three weeks of Rory's life plus during his gestation, waste fluid from his kidney was building up in this tube and not finding a way to escape. This led to the build up of e-coli, a bacteria that we all have inside us in tiny doses but is regularly flushed through our systems before it gets anywhere near the point of affecting us. It's this infection of e-coli which then found its way into his bloodstream and spread rapidly around his body, almost taking his life.
Antibiotics treated the infection but wouldn't prevent reoccurrence unless there was some way to connect the ureter to the bladder. The agreed remedy was immediate surgery to bypass the blockage and clear the ureter, in order to allow urine and bacteria to flow safely out of his body. This was Rory's first surgery, at just over a month old. He was too young to undergo the full bypass, however. His bladder just wasn't big nor strong enough to handle the procedure. Instead it was agreed that this would be achieved in two parts:
Part One - Ureterostomy
Initially Rory underwent a procedure called a ureterostomy. An incision was made to break the ureter free from the bladder and it was brought to the surface of his belly. He has been expressing urine from a little hole for over a year now, in addition to normally through his bladder (his right kidney/ureter have always worked fine). Pete and I have managed this quite easily by wrapping a second nappy around his waist underneath his main nappy. It has become second nature to us now - we don't really know any different and it doesn't seem to bother Rory.
Part Two - The Reversal
Now that Rory is 15 months old, his Urology Consultant has decided that he's old enough to undergo the reversal. Back into theatre we go, this time to feed the ureter back into his bladder, but directly through the muscled walls. As such he won't have a valve, but the strength of his muscular bladder should create a valve-like motion when he goes to the toilet, by compressing itself and squeezing the ureter shut, preventing debris moving back up towards his kidney.
The redundant hole in his belly will be stitched up, and that will be the end of it.
Naturally, I'm worried. I know I'll spend the first few hours/days post surgery wanting to see scans and evidence that everything is flowing as it should, checking his temperature constantly for any signs of infection. I don't think I'll ever not be scared of a urine infection when it comes to Rory, no matter how unfounded the paranoia may be. I've been assured that the procedure is actually quite common for Rory's urology consultant, Mr M, to perform, so there's no reason why everything shouldn't go smoothly. Nonetheless it will be a worrying time. To a certain extent, more worrying that his amputation surgery? The thought of him getting poorly again to that extent fills me with pure dread and I can't fathom ever going through that again.
The reason for this post is that this 'Part Two' surgery is just around the corner; less than four weeks away in fact.
We've already been back to see our lovely friends, the nurses, on Ward 2 and asked if we can stay with them when we come in. Even though it's not a Burns/Plastics related surgery, we're still under that team's care for his leg and they know us well, so they're hoping to squeeze us in. Ward 2 is where we feel safe, where we feel familiar.
I'll be glad to get this chapter closed, but the apprehension of surgery is never pleasant.
Orthopaedics & Plastics
In other news, we've recently attended clinic with his Plastic Consultant Miss T and, together with his Orthopaedic Consultant Mr F, we will be coming up with a schedule for some further surgery that is required on his leg. I'll update more on that later.
Prosthetic
We have an appointment with our prosthetists in a couple of weeks and we believe Rory is already growing out of his first prosthetic leg! So one day in the very near future he'll be needing to be re-cast for another. One year olds and their growth spurts!
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