Diving Into 2022; Armbands At The Ready

Belated Merry Christmas! We hope everybody has had a wonderful festive long-weekend. 

A few days before Christmas we attended a clinic with both Mr F (orthopaedics) and Miss T (plastics) for a very important appointment; to discuss the next steps for Rory's leg. This was an opportunity to get both teams in the same room to align their plans and identify where work could be undertaken in parallel. 

Surgery - Plastics, Orthopaedics, Urology

His leg still needs a lot of work. We always knew this, and knew that the past 6 months have been merely a break from hospital and surgery rather than the end of the road. The reality is that Rory will probably be in and out of surgery for a good few years yet. The main problem we have at the moment is that the skin graft is too tight against his bone. Typically there should be a good layer of tissue for skin to sit on, but there's nothing there above the bone because too much had to be removed in the first place. As a result, there is limited elasticity in the skin meaning his leg is growing but the skin graft area isn't. The subsequent tightening is threatening to pull his bone out of position, so needs releasing urgently. 

The required ureterostomy reversal which was postponed from November will happen in January, if all goes to plan. Then in February we are on Miss T's Plastics list for the intervention surgery required to remedy the above. She's booking out one of her whole surgery afternoons to give her and Mr F the time to examine Rory properly under general anaesthetic. The actions will be as follows:

1) Miss T will make an incision to release the skin and remove a lot of the graft work that happened back in 2020. Using Rory's chunky thigh (his baby fat) of the same leg she'll move some of the spare soft tissue over the bone where the graft was, essentially replacing it with good tissue. 

2) Mr F will take a look inside at the condition of the bone, and make a decision then and there as to whether he will insert a metal plate in Rory's leg, to support the realignment of the bone where the skin graft is causing it to bend. 

3) Miss T may insert a 'tissue expander' into Rory's leg. This is a little balloon which can be inflated gradually through an injection on a weekly basis. The purpose of the balloon is to stretch his skin slowly over a period of time, probably three months, to essentially create excess skin which can be used to fix any remaining area of skin graft. The expander may not be necessary depending on how much soft tissue they can move across in the first instance, but at the moment it's looking like this will be put into Rory as a precaution whilst he's in theatre anyway, just in case he does end up needing it further down the road. 

In addition to the operation, whilst he's under anaesthetic Mr F will arrange for him to have an MRI scan. They'll use measurements from this scan coupled with other scan results to calculate the growth that's happening in his leg (which we know is greatly reduced because of the damaged growth plate). From these measurements Mr F will be able to estimate Rory's final adult height, and the final length of his limb. This will tell us whether he will need further surgery to shorten (or lengthen) his leg to make it suitable for a prosthetic knee joint in several years' time. 

The recovery from this procedure will be a couple of weeks to allow the wound to heal, followed by weekly visits to inflate the expander if it ends up being required. We are going abroad in March and friends of ours will know how much Rory adores being in the water and swimming. We're really hoping that he will be fully healed in time so that he can make the most of the pool on holiday. 

Prosthetics

Amongst this, we have to consider Rory's prosthetic leg. We already have concerns that the shape of his prosthetic may no longer fit as well as it did, but with the lead time being 6 weeks from casting to delivery there is no point being fitted for a new one now if this surgery in February is going to drastically alter the shape of his leg. He won't be able to have his cast made until he's fully healed, which may or may not happen before our holiday. Therefore there's a risk that he could be without a prosthetic for 2-3 months, which will greatly hinder his physical development in that respect; i.e. with regards to his walking milestones. We are working hard to encourage him to take his first independent steps before he has his next surgery, which he's ever so close to doing. It's not the end of the world if he doesn't of course, there are no deadlines, but it will be a big weight lifted when he does and will provide some reassurance in the concept of his prosthetic and faith in the freedoms it will allow him. 

The question "will he ever walk?" sounds extreme but is a worry that always plays on my mind as we watch him struggle to figure out the bulky prosthetic. 

 

So, lots going on. It's a lot to take in, and the procedures they talked us through are not very nice to think about, but it's all necessary to get him to the point of having a limb that will grow with him and not be a hindrance. 

The Year Ahead

The next few months for us are going to feel very similar to Autumn/Winter 2020, when we were in Sheffield once/twice weekly for operations, dressing changes, clinic visits. It was a really draining time, and not something that we are particularly looking forward to, especially now that Rory is more aware of his surroundings, can protest and express frustration more than when he was a baby. But it needs doing, for his benefit. 

On a more positive note, we have lots of exciting plans to look forward to in 2022; trips with family, weekends away with friends as well as just the three of us, plus the wedding of two of our best friends! This year Pete will also get chance to finally run his Iron Man event after several years of training, which he's completing to raise money for Sheffield Children's Hospital. All of that coupled with Rory's extensive medical agenda means that 2022 is looking to be a jam-packed year!

I would like to round off this post by sending best wishes to our family, friends and readers for a happy and healthy 2022. 

With love from the Cullums