Learning About The Leg

Disclaimer One: I should start this and every post with a disclaimer that any of the medical facts I discuss are mine and Pete's interpretation of what we've been told by doctors and nurses. They may not necessarily be 100% accurate as we have been overwhelmed with information, but are our best attempts at understanding the extensive details of Rory's illness and recovery.

Disclaimer Two: This post contains some upsetting photos that up to now we haven't shared. Please be prepared to see some graphic images of Rory's leg injury. 

Development of the Extravasation Wound

In my last post I described how the Extravasation injury was caused (a leak from an IO line), and how we originally expected the long term damage to be some discolouration or scarring. 

During Rory's stay on NSU he received regular visits from the Burns Nurses who came to redress his leg (as the skin was being handled in a similar way to an extreme burn), as well as the Plastic Surgery Team who would take that opportunity to examine the wound, and the Physio Team who would use the additional pain relief as an opportunity to conduct some exercises on his leg to encourage movement. 

In the last post I shared an image of what the leg looked like a couple of days in: 

The Plastics team advised us that the 'grey' area over the knee (and down the other side of the leg) was yet to decide whether it would fully recover or if it would essentially die off. It was completely a waiting game, hence the continued re-dressing of the wound. It was now completely up to Rory's body to heal himself as much as possible. 

Over time it began to look like this:

Here you can see that the outsides of the wound are turning black and starting to scab over. This is known as demarcation, whereby the skin has no blood flow and cannot survive. This area slowly crept inwards over the next few weeks, taking over the greyness. This was the skin dying off. It was therefore to be expected that the grey patch over the knee would eventually succumb to the same and in time the whole thing would need a skin graft. We continued to wait. 

Once we'd been discharged from hospital from an infection point of view, we returned twice a week as out-patients for the dressings to be changed and the leg to be reviewed. Sheffield Children's really was becoming a second home for us- Rory was developing quite a fan club of nurses who loved having him around! It was lovely to be greeted by such warmth whenever we arrived though. It definitely took away from the intensity of it all and prevented the ward from being an emotional danger-zone. 

Physio on the Foot

During this time Rory's foot was curled inwards, and he wasn't moving it. There was a chance that the damage had gone deep enough to affect the nerves in his leg that controlled foot movement. Alternatively, it could have been due to the swelling around the area pressing on those nerves, giving him essentially the feeling of a "dead leg". As such, the Physio team did a lot of work on trying to regain some movement in that foot. We had exercises to do on a daily basis too. The ladies on the Physio team were fantastic, and fashioned a piece of foam into a splint to hold his foot in a normal position. The risk was that if his foot was curled inwards permanently, the tendons would grow at that length and then he'd never be able to straighten it again. This splint helped prevent that. Rory wore this for an hour or so each day. You can see in the photo that even wearing the splint, his toes/foot are trying to pull to the left and into that curled position. 

Fracture to the Growth Plate

Rory's leg was scanned (could have been an MRI scan, could have been an X-Ray - there were that many and he seemed to have them all!) which showed a fracture to one of the bones in his leg. This could have been caused by the insertion of the IO line, or it could have been caused by the general weakening of the whole leg as a result of the extravasation. Either way, at the time it wasn't a major cause for concern as it was expected that the bone would probably just heal by itself. After all, we'd been told many times about the miraculous healing ability of young babies. 

Debridement of the Damaged Skin

Eventually all of the greyness turned to black, and our plastics consultant ("JT" [initials for an element of anonymity] - an absolutely amazing doctor who is intelligent, kind, dedicated and honest) advised that the time was finally right to begin the debridement procedure. This involved removing the 'scab', effectively, and getting a better understanding of the extent of the damage underneath. Was it just at skin level (unlikely)? Was it down to the muscle? How much reconstruction would be needed? 

Here you can see that the skin is now fully black and ready to be removed. 

The debridement of the leg was a surgical procedure. Although this was Rory's second surgery (he'd already had his ureterostomy by this point), it was still a worrying time for Pete and I. We shared the handover; Pete took him to theatre with the nurse, and it was my job to collect him. We were given a pager that would light up and buzz when he was ready, like when your table is ready at TGI Fridays! We never really knew if surgery would be an hour or five hours, so had an agonising wait for him. As the surgeries went on we ended up playing cards to take our minds off it, and also grabbed a Costa with some lovely friends Sarah and Lewis, whom we had met on NSU. No matter how well we distracted ourselves however, I still felt sick when it came to standing in front of the theatre doors, waiting for them to open and to be escorted through to the recovery room where my incredibly sleepy (and hungry!) baby boy would be wrapped up in a blanket. 

 

Initial debridement of the leg went roughly to plan, with a lot of muscle underneath showing good blood supply and therefore good potential for healing. However, there was a worrying patch of muscle over the fractured bone. Even worse, that patch of bone underneath was similarly unhealthy. The damage went a lot deeper than we'd hoped; this was incredibly bad news. What made this more complicated is that the area of damaged bone included his growth plate; in short, it's the piece of bone that controls the growth of the length of his leg. Without that, the top bone in his leg simply wouldn't lengthen. 

A vac dressing was put over the wound (which was now an open wound in the absence of the skin). The vac is a machine which attaches to his leg through a tube, and continuously sucks bacteria and infection away from the wound, collecting it as a brown fluid in a compartment. The vac dressing has to be changed weekly as a surgical procedure, hence why he has to undergo so many trips to theatre. 

The News We Didn't Want

The bone wasn't recovering. Ultimately Rory's consultants came to the conclusion that the piece of bone was too damaged as it had been starved of a sufficient blood supply for too long, and would need to be removed. Not only has this shortened the bone, but it's also removed the growth plate. Rory's fate was sealed; the top of his leg would not grow, or at least, would not grow to a normal length. We now had to accept that our baby boy would require a prosthetic leg; it was 100% confirmed. 

To try and salvage as much of a 'limb' as possible, Rory's top and bottom leg bones have been fused together. The bottom bone still has its growth plate intact, so if the combined length can reach level with knee of his other leg, they can remove his foot, turn his ankle bone into a 'knee joint', and he can use a below-knee prosthetic as opposed to an above-knee prosthetic. 

Despite knowing this for certain, seeing him come out of surgery number 5 with four pins and a brace holding his leg in a straight line was pretty emotional. There was no going back. 

In the image on the left you can see two of the four pins held in place by the piece of brace (in black). You can also see the vac dressing which is what looks like a large white plaster coming off into a tube. 

Emotions

We were given the news in the nicest way possible, but nothing changed the fact that our baby boy was losing his leg and life would never be the same, or 'normal', from that moment on. Despite all the damage and trauma his little body had been through, the damage was now permanent. He'd never fully recover. Since the horrible first weekend in which he was first blue-lighted into intensive care, this was the most we'd cried. We knew it wouldn't change the way we'd treat him. We knew we'd make it our life's mission to give him every opportunity to follow whatever dreams he has. And we knew he'd grow up with the mentality that this wouldn't hold him back. But in that moment, in the shock of it, we had to allow ourselves a day or two to cry. Time to be sad for him, time to be sad for us. We have some tough times ahead and we have to prepare ourselves for that in order to be strong enough to prepare Rory for it too. Mental health has been in the spotlight a lot over the past couple of years and is not something to be brushed under the carpet. We've certainly been through the mill emotionally over the past two months, so I'll write a separate post addressing that particular journey. 

Next steps

As I write this Rory has been through 7 operations and we're back in Sheffield in less than two weeks for number 8. The plan is for a dressing change with the potential to begin some of skin graft around the outer edges of the wound, where the muscle is healthy and it's just the skin that needs replacing. Under his dressing he currently has a temporary skin substitute which is encouraging blood vessels to grow upwards. This will give the skin graft the best possible chance to 'take' and be successful. 

The pins/brace will need to be in place for a couple of months to allow the bones time to fuse together. In the meantime we're hoping to make good progress on the skin graft. There is a risk that there is still a small piece of damage to a tiny part of muscle/soft tissue, so we are in no way out of the woods yet. 

As always, nothing is certain and we are guided mostly by how his body tackles the injury itself, so we have to be patient, see what happens, and enjoy all the smiles, cuddles and positive developments of our baby boy in the meantime.