The Little Lion - Rory's Story

 After being rearranged several times since November 2021, earlier this month Rory finally underwent his ureteral reimplantation procedure. This was a big step for us, albeit nerve wrecking due to the associations with his prior infection, but we made it through.  Context/Background As I have described in earlier posts, Rory's left ureter was formed with a closed valve at the point where it meets the bladder, causing a blockage. As such, urine produced by his left kidney was trapped and backed up without anybody noticing. Eventually that build up of debris caused levels of e-coli (normally flowing through the body in tiny amounts) to reach dangerous levels, resulting in sepsis, meningitis, and all of the complications that followed. At under two months old, the quick and safe solution was to sever the ureter from the bladder and bring it to the surface of his body, giving him a little stoma (a hole) in his tummy where urine from his left kidney was expressed. His right kidney ...

Whilst the blog has been quiet, life has not! There's been quite a bit going on with medical appointments, birthdays, holidays, a Covid case... so I thought I'd take some time to fill you in on the past couple of months.  Surgery & Leg Update At the time of writing my last post back in May, Rory had just undergone his thirteenth surgery which was some reconstructive work on his leg by his plastic surgeon, Miss T. In the weeks following we were back and forth to Sheffield for dressing changes and check ups, eventually changing the dressings ourselves and emailing photos across. The skin healed well, with just a small patch within a crease that took longer than the rest. I'm sure I've said it before, but I'm very thankful that the nurses trust us enough to do so much ourselves at home because twice-weekly commutes to Sheffield for 30 minute appointments are not fun, especially with both Pete and I working full time. He's all healed now so we were able to get h...

Most of you reading this are friends and family who probably saw Pete and I share on social media earlier this week the amazing news that Rory has taken his first independent steps! He was pushing his walker around pretty much as soon as he wore his first prosthetic leg back at 12 months old, but it's taken a lot of work to get him to let go and take steps on his own at the grand old age of 20 months. Pete and I have practised with him, grandparents have practised, and we have a fab physio called Beth who sees us regularly and has given us some great advice along the way. We're over the moon that he's finally managed it! We can't wait to let Beth know as she has been part of his journey of standing, side-stepping, walking with and then running with his walker, cheering him on every time.  It hasn't been easy for him that his prosthetic is straight (due to the length of his stump not being short enough yet for a knee joint) and also the shape of his leg making the pr...

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 ch...

There have been several times this month when I've thought about posting an update, but so much has been going on that I decided it would be best saved to the end of the month for a July round-up! Prosthetic Update I'm sure the question most of you are wondering is 'how is Rory getting on with his prosthetic?' It's certainly the first thing people tend to ask us.  Truthfully, it's still slow progress. I feel a little guilty for the fact that Pete and I had quite a high expectation that once he had his leg, he'd be off; standing, walking, ticking all the boxes. Especially with how well he was adapting to crawling and getting about on just his stump. But the reality is somewhat different. It's confusing for him. It's not natural and he hasn't worked out yet what this leg will enable him to do. He's much quicker, comfortable and in control of himself on his stump. But that is completely fine; we're going at his pace and we have to remind our...

Before jumping into the skin graft journey I feel it's a good time to look back at how much progress we've made over the last two months, despite the fact that reduced visits to Sheffield have meant things have been pretty quiet for us.  This photo was taken on 5th January, at 6 months old.    Looking pretty different to 5th November, 4 months old.  I'll run through the various points of note in the November image:  1) The big one is the Vac Dressing. That's the machine in the black bag which is attached to Rory's leg. Regular readers will recall that the vac was permanently attached to Rory for about two months, from when the dead skin had been debrided to once the skin graft was mostly healed. Its purpose was to keep the open wound clean and clear of infection, and also to encourage blood vessels to grow upwards and prevent a dip or crater in his leg as the graft healed. We were all glad to be rid of the vac! 2) Difficult to see on this image but behind the le...