Rory's Skin Graft

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 leg dressing is a fixator. This was the metal bar fixed to Rory's bones to help them fuse together following the removal of his knee. Once his top and bottom leg bones had fused, the fixator was removed. 

3) The bandage on his left leg, his 'donor site'. Skin was removed from his other thigh as part of the skin graft. Only a thin layer of skin was removed which meant it healed quickly, but a bandage was kept on for a couple of weeks just to be safe. 

4) Second nappy; it's always easy to forget the problem that caused all this. Rory's ureterostomy will be in place until he's roughly a year old, and the urine that it lets out is captured by a second nappy that we wrap around his waist like a belt. It's a size 4 at the moment, whilst his normal nappy is a size 2. You can see it just poking out the top of his waistband in both images. 

Going back to that first image of today, all dressings are now gone and all that remains is the nappy around his waist! Not only is it great news in terms of his medical progress, but it also means it's now much easier to dress him, and fit him into all his lovely outfits. 

The Skin Graft

I've talked about the skin graft quite a lot throughout this blog, as it's a major part of Rory's recovery. Ever since his time on NSU when we, and the Plastics consultants, realised that the large patch of damaged skin on his right leg was completely dying off, it was inevitable that a graft would be necessary. We had to wait for the skin to fully 'declare itself' as well as give it chance for some natural healing around the edges, then Rory underwent surgery to have the skin debrided (medical term for 'removed'). A few weeks later, once the required surgery on his bones and muscles were complete, the Plastics team then covered the open wound using skin from his other thigh. 

The graft itself happened in just one trip to theatre; JT (Plastics Consultant) managed to take a large square of skin from his other leg that completely covered the wound. This is known as "harvesting" from the "donor site". Honestly, we needed a thick skin (excuse the pun) just to cope with some of the awful imagery conjured by the language used by the medical professionals. 

Initially the Vac Dressing remained in place to help it take, which meant that whenever the dressing was changed it happened in theatre, so it wasn't until a few weeks after the procedure when Pete and I first saw the leg. 

I wasn't really sure what I was expecting to see, but we were confronted with this painful sight:

You can see that the fixator is still in place here, too. The skin was placed around and underneath it, so it was only the pin sites that were therefore 'missed' by the graft. It must have needed a very steady hand to move the skin... what a skill. 

Fortunately the skin 'took' really well. Roughly 95% of it was accepted by the leg, which apparently is a great result - we were told that 50% would have been expected as a minimum. The remaining 5% was able to heal by itself, as there was enough surrounding skin. 

Once enough of the wound had healed sufficiently enough for the vac dressing to come off, dressing changes occurred in the treatment room on the ward as opposed to in theatre, which gave Pete and I the opportunity to see it weekly and to better track its progress. Eventually, as I've mentioned in previous posts, we were able to change the dressings ourselves at home. We did this every three or four days at first, then moving to every two days, until the wound was fully healed. The procedure was simple really;

- Wash the wound in soapy water, then dry

- Apply medical-grade honey to any open/fleshy areas

- Apply Hydrocortisone (cream) to any areas of 'over-granulation' (where the skin pushes up and goes bumpy - think when you wear a watch too tightly)

- Apply Diprobase (cream) to the dry/healed areas, and lightly press and hold on those areas for 20 seconds. We have to do this three times a day. The compression helps prevent excessive scarring, as the compression encourages the skin to heal flat. 

- Apply Scar Gel to the healed areas twice a day.

- Apply the dressing (plasters) to any open areas (over the honey). 

Today, we're down to just Diprobase three times a day on both legs and Scar Gel twice a day on one leg. This care will be ongoing for quite some time. It's not too difficult to manage; we tie it in with nappy changes.

The below image is from quite early on in the recovery process - November time. The bright red dot that you can see at the lower end of the graft, near his ankle, is one of the pin sites from Rory's fixator. This was one of the open areas that required honey/dressing in order to help it to heal. 

There's a lot of scabbing around the rest of the graft site. This is a good thing; it means that there is good skin underneath. We've learned that anything that's not 'wet' is good.

In the previous blog post I mentioned that part of the graft unfortunately re-opened, most likely due to its position in a crease which had allowed it to become hot and sweaty, with possibly a bit too much friction in that area. This was the first sign we had that the skin was going in the wrong direction. We put a dressing on it after seeing this:

And within two days that little section had completely opened. This was the mess we were confronted with when it was time for Rory's next bath and dressing change:

I'm sure you can understand why we were concerned. We emailed this photo to Ward 2, and the next day made the 3 hour round trip to get it swabbed for infection. The nurses advised us to carry on with what we were doing, but also gave us some additional cream so that if the swab did come back with infection markers, we had the 'next step' dressing to move onto without having to trek back to Sheffield. Fortunately it wasn't infected, we just had to keep it clean and keep an eye on it. 

Over the next few days it did improve, thanks to the honey dressing that we immediately started applying:

And then improve further still, this photo a few days later: 

Today, the leg is now fully dressing free and totally healed. We continued sending photos to Ward 2 twice a week for a few weeks after the leg had healed, but this week they officially discharged us! We'll still need to go back every few months or so for checks up with the Plastics Consultants, but as far as the dressings are concerned, we don't need weekly check ups with the nurses now. 

There was always going to be significant scarring, but over the next few months the Diprobase cream should help soften the skin and take away the shine, so that it looks less terrifying. It's just cosmetic though, and as Rory gets bigger this patch will become proportionally smaller. After everything he's been through, a bit of scarring is the least of it. 

This photo was taken a few days ago:

The Donor Site

We mustn't forget that whilst his right leg has been through an ordeal, Rory's left leg has had to go through its own healing process. 

The bandage on the donor site was only in place for a short amount of time (if I recall, maybe a week or so?) and as soon as that was removed we had to go about applying the Diprobase, same as the other leg. 

At first, it looked very pink, but was healing well: 

However, this area is extremely sensitive. Where Rory's nappy has been pressing on the bottom part of it, the blood vessels have been compressed and resulted in some nasty looking bruising. Luckily it's not painful for him, we just have to wait for it to calm down on its own. In an attempt to prevent it from getting any worse, we've tried different ways of protecting the skin. The easiest so far has been to tuck a couple of cotton wool pads inside his nappy, to provide a soft cushion for the skin. So far, so good... well, it's not getting any worse!

We've been advised that this leg will also probably stay red for a few months. Which is no bother, we will just continue to apply cream.

"Why is it such a funny shape?"

One thing we are often asked is why his leg looks such a strange shape. 

 

(Note: I took his leggings off to take the photo- he doesn't normally live his life half dressed!) 

There are two reasons for this. 

Firstly, when the surgeons were removing tissue and bone, they also had to take away some damaged muscle that was past the point of recovery. The piece of muscle should be on the left hand side of the leg as you look at these two photos. Whilst he will grow and it will look less obvious, he might always have a slight dip in the side of his leg where there is muscle missing. Depending on how he grows, he may require further surgery to bulk out the limb so that his prosthetic can attach more easily. Muscle reconstruction is one of those things that we will have to wait and see what happens as he gets older... 

Secondly, because a piece of bone was removed, the entire leg has been shortened. But a lot of his muscles have remained the same length, which means they've scrunched up as they find space in his new, shorter leg. This is also why it looks like there are strange creases in his thigh, and the right hand side looks overly chunky. We have been advised that this will mostly correct itself over time, but again it's largely a 'wait and see'. With Rory's injuries being rare, there aren't many photo references available to us.

As such, his muscle looks like it's dragging across to one side, which makes his leg as a whole look like it's bent at a funny angle. I've seen the X-rays and can assure you that his leg is definitely straight! It's just the muscle being a little bit all over the place which is distorting where you think his bone should be. 

To be completely truthful, there are plenty of times when Pete and I look at his leg and wonder how it's going to look in the future, and how it's ever going to go from this to an adult 'thigh'. It doesn't always make a lot of sense to us, let alone anyone else. This is what I sometimes struggle with; not being able to envision what it's going to look like in the future, because of how 'wrong' it looks now. We know we have to trust his consultants and have faith in them. It's all we can do. 

When he's wearing clothes though, the distorted muscle shape is barely noticeable:

 

You may notice in previous photos I've shared that Rory has a tendency to stick his leg out to the side quite a bit. It's just a comfy position for him, but Mr F has encouraged us to pull it in throughout the day as part of some gentle physio. With a spare hand on his left hip to hold his pelvis steady, we just have to 'bounce' it in a few times, then hold it in for 10 seconds, and also try lifting it up and down too. By doing this we are ensuring that the muscles in his hip don't become too tight from staying in one position all the time. As far as physio goes, it's not too bad. It used to upset him but now it makes him laugh! So I think it's definitely doing it's job. 

Which brings me on the fact that one significant blessing we've had is that the skin graft, and leg in general, doesn't seem to bother Rory anymore. Since the bulky bandages came off he has been on zero pain relief and shown no signs of distress, even when we have been changing dressings or applying cream. A far cry from August-October when he was on 4 x paracetamol and 3 x ibuprofen a day.  

We'll take that as a victory. 

As always, our continued thanks go to the wonderful team on Ward 2, as well as Rory's consultants in Plastics and Orthopaedics. We probably won't have any further face to face appointments on Ward 2 anymore, certainly not for the foreseeable, which is a shame! We will miss them lots... hopefully in a post-Covid world we can pop upstairs and say hello, as our hospital visits are, of course, far from over.