Is 2020 Over Yet?

It's safe to say that 2020 has been a pretty terrible year for a lot of people, us included. 

Rory's arrival has been, for us, one shining light in the middle of chaos and gloom. 

Since early November we've seen photos of Christmas decorations popping up across social media (again, us included), partly because during lockdown there's little else to do on a weekend, but more so because I think there's a shared feeling that the sooner we get Christmas over and done with, the sooner we can wave goodbye to 2020 and happily welcome in 2021. I'm certain that none of us actually believe that we'll wake up on the morning of the 1st January and Covid will have disappeared for good and the economy will have boomed overnight. But there's something about the ticking over of the date that inspires a level of optimism. "We made it through 2020. This year has got to be better."

For our family, the turn of the year doesn't just signify a change in date but also a major milestone in Rory's journey - the end of a long run of weekly hospital trips.

Last week he finished his round of surgeries, with a whopping total count of 11 trips to theatre over the course of 12 weeks. These are his 'Bravery Awards'; such a lovely touch from Sheffield. The little things really do make a difference. The Theo certificate (yellow bear) was especially printed for Rory because he was getting through all of the available designs quite rapidly!

It's great to look at how far he's come, as well as see how he's grown. Here is a post-op photo from Surgery #1 back in August:

And to compare, here is a post-op photo from Surgery #11. A little bit older. A little bit wiser. Just as cute as ever:

We continue to be in awe of how well and how quickly he recovers from general anaesthetic, and how little he now seems fazed by it all. Saying that, it's never nice to go through the period of starvation, the handing him over, and then waiting for hours for him to be returned, not knowing how things have gone. So we are pleased that we'll get a break from this for a while. 

Medical Update

We are vac free! Those who have seen us over the past month know how cumbersome and awkward the vac was to carry around. As described in an earlier post, the vac was a little machine that was permanently attached to Rory's wound via a tube, with the purpose of suctioning bad 'stuff' away and keeping it clean and clear of infection. Carrying that around in addition to carrying Rory was an absolute pain, even more so when it frantically started beeping about a leak ("quick Pete, grab the sellotape!" - from the looks on their faces, his plastic surgeons JT & MW didn't appreciate the bodge job we did to re-stick down where some of the tape had lifted). I digress. The vac is now gone and what a relief that is. We don't miss it at all!

His top and bottom leg bones have successfully fused, and the fixator (pins and brace) has now been removed. That's permanent; the whole leg will be straight, and because we know it won't grow to full length he'll need a prosthetic to match up length-wise with his other leg. We have to wait until he's four or five years old, however, for them to make him a knee joint. The reason being is that his good leg has to grow enough so that his good knee is in line with his ankle on his bad leg, as that's the joint they're going to turn into a knee. (If you're still following - well done! If not, don't worry, I'll write a separate post all about this in due course). We have further meetings scheduled with his amazing orthopaedic surgeon, Mr F, to go through the plan. 

From a Plastics point of view, the skin graft is complete and is progressing very well. 

His 'donor leg' which provided the skin for the graft is also healing really well, and no longer needs a dressing; just cream applying three times a day to help the area recover with limited scarring. It's not as sore as it looks, thankfully.  But isn't it incredible that they've taken a thin square of skin and moved it across to his other leg in order to cover an open wound, for it to then continue to grow as if it had never moved... the skill involved leaves me awe-struck.

The graft on his bad leg still has some patches that require dressings, so we are still in Sheffield weekly. Pete and I will be changing the dressing ourselves on a weekend, as well as cream three times a day to the exposed area.  This is how Rory looks at the moment; a far cry from the mound of bandages he has had for the past four months which is great. You can see a portion of the skin graft in this image, which just looks like a nasty burn. Considering the graft only happened a week ago, it's absolutely incredible for so much of it to be 'out in the open' now. JT and her team have done a fantastic job. 

I do have photos of the leg underneath the dressing, but I'll save that for another post once it's fully healed and the dressings are gone, where I'll also explain more about why his leg looks such a strange shape. 

In the meantime this is Rory today; vac free with only minimal dressings on his bad leg. 

Our Ward 2 Family

Now that the bone fusion and the skin grafts are complete, with no surgery required until next year, we just have a few more weekly trips for dressing change and then that's it! No more visits to the Ward with the exception of a check up every other month or so.

I'm actually going to really miss the nurses on Ward 2, who have taken such good care of not just Rory but also Pete and I. Liz, Katie, Emma, Sophie, Alice, Kirsty... and others too, including the brilliant Physios; Olivia, Lena, Debbie and Kayleigh, who have been with Rory from the beginning. They've helped turn an awful situation into something bearable. I know I've said it before, but they've made Sheffield Children's Hospital feel like a second home, from the moment we arrive on the ward. A couple of the girls are now working on other wards, but have specifically popped across during their break when they know we are in. It means so much to us that they truly care about our little Rory. I'm not sure if I'm allowed to take photos with them and share them here, but I'll try and find out... after all, they play just as important a role in Rory's journey as his consultants and I'd love to be able to document their part in his story. 

They really are superstars; from dressing changes to cups of tea, from reassuring words to long winded stories about unrelated things to distract us from what's going on.

Thank you, Ward 2.

2021 - A Happy New Year?

In terms of next steps, we are expecting the dressing changes to be complete before Christmas. We also have a few more scans/reviews over the coming months with our Urology consultant regarding his Ureterostomy (I often forget about that...), and we know we have several discussions in the pipeline with Orthopaedic consultant Mr F about the short, medium and long term plans & goals for Rory's leg. We know the outline, but I suppose it's the detail we need to talk through. 

Then we wait for summertime, closer to Rory's first birthday, for the two significant operations. 

Firstly, he will need his Ureterostomy reversing. His bladder will be big enough and strong enough for the tube to be fed back in, thus bypassing the blockage that caused his illness in the first place, and his little stoma will be stitched up to nothing more than a tiny scar on his waist. 

Then it's A-Day. Sometimes I can happily talk about his impending amputation; other days I can't bring myself to say the word. Sometimes I shrug it off and focus on the future; other days I struggle to keep it together. It's sat there in our near future like a storm cloud that you can see approaching even though you're standing in sunshine. You know it's coming but you're not ready to go back inside just yet. 

2020 is nearly over, but for our family 2021 is nevertheless going to bring its own series of hurdles. We'll be fine though, as long as we keep looking after each other, and our little lion.