Arguably Our Most Important Surgery Yet - Finally Complete

 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 still fed into his bladder as normal, so for the past two years Rory has been wearing two nappies; one around his waist to catch the urine from his stoma, and one 'normal' nappy. 

The stoma was always planned to be a temporary fix until his bladder was big enough to support reimplantation. His consultant, Mr M, intended to reattach the ureter by feeding it through the muscled wall of the bladder, bypassing the blocked valve completely. In the absence of a valve, the contracting of the bladder when going to the toilet would naturally do the same job by squeezing the ureter shut. 

Despite the fact that this operation is surprisingly routine for the Urology team at Sheffield Children's, I was incredibly nervous at the prospect of tucking this ureter back inside his body and the risk that another blockage could cause the same infections as two years ago - a scenario I dread repeating. 

The planned procedure: a really helpful diagram that helps visualise a normal ureter position (left) and Rory's new ureter position (right)

Photo credit to Kaefer, Misseri, Frank, Rhee, Don Lee, "Refluxing ureteral reimplantation: a logical method for managing neonatal UVJ obstruction", February 27th 2014

Surgery Day

Thursday arrived, and luckily we were on the morning list. With this being Rory's fourteenth surgery, being in TAU, speaking with the anesthetists and signing the relevant forms felt old hat to us. This time however, they threw in a bit of a curveball by suggesting that we give Rory a pre-med sedative, which was a liquid medicine aimed to make him really sleepy before they actually anaethetised him. He hadn't had this pre-med before, but he always strongly protested at having canulas put in so we believed it was worth a try for a calmer entry into surgery. Whether or not it was the medication keeping him relaxed, this time he quite happily took the anaesthetic mask and went into theatre fairly peacefully. Cue the typical agonising wait in our room on the ward for the next few hours. 

When he'd finished in surgery and we met him in Recovery, we instantly recognised that the effects of the pre-med were still going strong. We are normally reunited with a hungry little boy who wants a cuddle. This time he begrudgingly opened his eyes when we arrived, then went back to sleep for another few hours. Even back on the ward when we transferred him to his bed, he just wanted to curl up and sleep. When he did wake up he was incredibly groggy and didn't want any food or drink, despite him having not eaten since tea time the night before. It's the first time in his whole life where he hasn't been tempted by a gummy bear, a smartie, or cake. This was so unlike him; he's always bounced back so well from surgeries. Luckily by tea time he started to come around; albeit still sleepy but we had a cuddle, I opened a packet of crisps and as expected they were swiftly stolen. Rory was back!

Shortly after waking up post surgery.

Post-Op Monitoring

Because of the damage that his abnormal ureter had caused him as a baby, I had very strong concerns and required reassurance around how he would be monitored following reimplantation. I needed to make sure that we weren't recreating the same problem; I had to know that the route from the kidney to the bladder was clear and working, and I had to know that it was being taken seriously. Rory had a great team; his consultant Mr M and Dr K both operated on him. Dr K was so lovely and patient with us as we barraged him with questions. Alex and Kerry were our nurses on day shift and they were great - both so kind and had fun with Rory. Between them all I was able to get a better understanding of the complex monitoring system that poor Rory was strapped to for three days; 

1) IV drip: fluids to maintain hydration, and background morphine to manage pain

2) Stent: the stent was a thin tube entering Rory's stomach through the wound created to conduct the surgery. The stent followed the ureter into the bladder through it's new entry point, then doubled back and traveled up the ureter and directly into Rory's left kidney. The stent allowed urine to be expelled from the kidney, out of Rory's tummy and into a little bag, similar to a catheter. This stent, it turns out, was a key part in proving the success of the operation - firstly by proving that there was a clear route from the kidney to the bladder by way of tunneling through, but also the little amount of fluid that was collected by the stent in the 48 hours this was in situ proved that urine from that kidney had to be going somewhere else, and that somewhere could only be Rory's bladder. If the bag on the end of the stent had been filling up rapidly or at the same rate as the catheter then we'd have had concerns that urine was still not getting through to the bladder. Fortunately this wasn't the case. Finally, for the first time in his life, Rory's left kidney was feeding urine into his bladder. What a relief!! 

3) Catheter: the catheter entered Rory's bladder the 'normal way' and was there to ensure his bladder remained constantly drained, as a way of releasing pressure. A full bladder would have created pressure that could delay healing of the wound/ureter entrance site on the wall of his bladder OR cause leakage of urine out of the bladder while the ureter healed. Both scenarios would have caused problems and the potential for infection. It was therefore important to keep low pressure by way of an empty bladder at all times.

4) The rubber glove! Crazily, this isn't a medical term. To prevent the incision across Rory's tummy healing around the stent before it could be removed, the operating team literally cut the finger off a rubber surgical glove and tucked it in the wound around the stent. That's the extent of my knowledge of this bizarre medical 'hack' as it were. When the stent was removed 48 hours later, the glove stayed in for a further day to give the hole time to close gradually rather than creating a big gap in one go. The concept of it freaked us out slightly, so we were pleased when it was finally removed. 

In addition to the above equipment, Rory's fluid output was measured on an hourly basis for the three days that we were in-patients. We weren't able to go home until they were happy that he was drinking enough, which he wasn't at first. The IV kept his fluids topped up but at one point the ward doctor considered increasing the fluids in his IV. This would have been a backwards step and more time in hospital, so we were desperately encouraging Rory to drink more water himself so that he could come off the IV. Eventually with encouragement and a little bit of bribery, he picked up the pace and on the Saturday the IV was fully removed.

When Rory finally perked up enough to eat... can't go wrong with Wotsits!

Fortunately our room had a view overlooking a junction, so Rory and I spent a good few hours through the night watching the traffic lights change. It kept him entertained while I occupied myself with a stealthy puzzle book. 

Heading Home with the Catheter

With the surgery being on the Thursday we were hoping to be discharged on Saturday, although this ended up being Sunday. The additional night just gave the team an extra 12 hours of monitoring. In the end, it wasn't too bad and provided peace of mind for Pete and I. Although the fluids, morphine and stent were all removed on the Saturday, the catheter had to be in for a week to give the bladder time to heal. This meant we had three days at home (Monday to Weds) in which we had to keep Rory relatively still until he was booked in for removal on the following Thursday. Unfortunately, Rory is two years old... and anyone who knows a two year old knows that it's pretty much impossible to keep them still! Nighttime was particularly tricky as he's a wriggler who tosses and turns constantly. We worried that he would get tangled up in the tube of the catheter and either pull it out or strangle himself. Fortunately neither of those scenarios came to pass, but it was twisted and strained on a regular basis. It was also really sore for him despite regular pain relief, a fact he made clear. He would tug at his nappy and tell us that his "bits hurt", and occasionally let out little yelps of pain if he got the bag caught while moving. We tried to help him as much as possible, and filled the days with walks in the pushchair, lots of tele and lego; activities that would keep him sat in one place as much as possible. 

The catheter looks red because it was tainted with blood and debris from the operation. It wasn't until about 6 days post op when his urine was finally running clear. 

Medication wise Rory was on Trimethoprim (antibiotics) twice a day in case of infection from the catheter, Oxybutynin twice a day (a muscle relaxant to stop his bladder spasming as a result of the catheter) and paracetamol as required; beginning at 4 times a day but dropping to twice over the days that followed. Pete and I also had to learn how to flush the catheter on a daily basis, hence the goody bag of supplies we were discharged with. 

On Wednesday, 6 days post surgery, I was at work in Leeds when I got a call from Pete to say that he and Rory were on their way to Sheffield A&E; Rory had snapped the tube of his cathether! A quick phone call to the ward from Pete and they had asked him to get in quickly. Upon review they decided that with it being only one day to go, Rory would be safe to have the catheter removed rather than a new one put in. Luckily it had snapped in a place that meant surgery was not required to get the remainder of the catheter out. Several hours later, the boys were heading home.

Around ten days post surgery (this weekend just gone) the final dressing across his tummy was removed meaning Rory is now a free boy! For the first time since he was a month old we are now back to wearing one nappy. It feels very strange, like we're missing something, but it's a fantastic milestone to have reached and we're glad to put that stage behind us.  

Next Steps & Scans

We will be back to Sheffield for an ultrasound next month. Although urine is now flowing, they want to keep an eye on the condition of his ureter. It's been through a lot of trauma and will probably look swollen and scarred on scans for the rest of his life, but yearly scanning should enable his consultant to check that there are no further problems. 

If you've read this far and are not completely confused by what has happened - well done! It took me a while to piece it all together and required lots of input from nurses; typically after the doctors had left the room and me asking "can you explain that to me because I have no idea what he/she just told us?" As I've written before, one of the the driving forces behind this blog is my need to record all of this complex information for the benefit of my own processing and understanding.