Setting the date.

Happy Saturday one and all! Isn’t it nice to see the sun shining again? It certainly makes everything seem a bit brighter. Although, it is 100% that time of year now when whatever outfit you choose to wear is wrong and you either end up mafting or freezing – there is no middle ground.

T is now a sporting superstar! He recently played in his first ‘Wheelchair Basketball’ game! He did SO WELL. The team he plays for (Kingston Panthers if anyone wants to give them a cheeky follow) are incredible. He is the youngest player on the team, but they are so supportive of him and have really helped to develop his skills and confidence. Chris, the coach, ensures all of the players receive an equal opportunity and he has been a fantastic role model for T to work with. They even whipped out a lower basket in the games to ensure T has the opportunity to score, as they use full size baskets and he’s a bit shortish. I have to say though, it is one bloody hardcore sport. Crashing into each other, wheels everywhere, highly competitive and aggressive. I would encourage everyone to watch a game.

The Kingston Panthers

As the title of this blog suggests, a very important date has been set for us. Not a wedding, sadly, although I would happily have a third wedding (J and I have already renewed our vows once in Vegas, but I am sucker for celebrating love and weddings… J however, does not quite share my enthusiasm or logic) but it is in-fact – T’s spinal surgery. You may recall from our last blog that T was put on the fast track list for his Spinal Fusion. We were told it would be September at the earliest, but more than likely April/May of next year. I was, therefore, unsurprised when I received a call to schedule it for May 25th. I was however, EXTREMELY surprised when they stated that it would be May 25th of this year.

Since our appointment with Mr Brakewell (best name for an orthopaedic surgeon EVER), T has actually started to experience some pain and discomfort in his back. We are all pleased and relieved that this surgery will happen sooner rather than later – although I would be lying if I said that the potential risks and complications were not worrying. It’s sort of a ‘damned if you do, damned if you don’t’ situation. Have the surgery: reduce pain and discomfort, release his organs from their wonky spinal jail, improve movement and mobility BUT also potentially risk a large surgical complication or spinal cord damage leading to paralysis. Or, don’t have the surgery: no large surgical complication or spinal cord/paralysis risk BUT become a one armed man, continue to allow the spine to compress his stomach and lungs, have more pain and eventually lead to heart and lung damage…

As T says, the operation has “very good odds”. Surgery it is.

We decided initially not to tell T that the date had been set. We weren’t sure how he would react and we didn’t want him to be stressed or worried for an unnecessary amount of time. It also allowed myself and J the chance to get our head around things and start trying to organise some of the logistics of the surgery and how we will navigate the period of time T will be in hospital and his recovery. This week we have begun the barrage of appointments in preparation for the op. We told T last week, at the end of his Easter holidays, about the date. He went on a bit of an emotional rollercoaster for 24 hours, but now seems to be feeling ok about it all. On Monday, things became very real as we attended his pre-op appointment in Sheffield.

This was a full day affair, and I think we visited almost every department in there! What I will say, is that I have every confidence in the hospital. The staff (on the whole) were wonderful, and the Spinal Nurses* in particular were fantastic. We started the day with a 1 to 1 with Ellie the Spinal Nurse. She was ace and talked us through the day and the operation, answering any questions that T and we had along the way. Blood tests were next. As T has never had surgery before, they needed to take A LOT of blood and do 2 separate tests. He did so well and was making the Phlebotomists laugh. He did have a bit of a funny turn during the second test however. This was a cross match test (I have no idea what that means), but it involves pricking the thumb and squeezing blood out of said thumb into a vial. He survived the giant needle… but the thumb squeezing was too much! He went a whiter shade of pale and thought he was going to pass out. Apparently the thumb squeezing does this to a lot of patients, so a nice nurse informed me.

We pumped him full of sugar and it was on to the next one! Anaesthetist next. This is the one where it went a bit wonky.

The Anaesthetist was clearly very experienced and good at her job. However. 2 things should be noted here.

1. She will not be T’s actual Anaesthetist

2. She had not looked at his case prior to coming into the room with us

She initially started talking us through the procedure of putting T to sleep. However, she then noted in his file that he has Hypertrophic Cardiomyopathy (T has a heart condition to those who may be new to the blog). T sees his cardiologist in Leeds every 6 month to a year, they perform an echocardiogram and an ECG and they monitor him extremely closely. The past 3 visits have shown no further deterioration of his condition, which is amazing. The Anaesthetist however, zoomed in on it in the same way that a wasp zooms in on a Solero (which are, in my opinion, far superior to Magnums). She began talking about the possibility of the surgery not going ahead, and all of the many many complications T’s heart could encounter, and placed particular and repetitive emphasis on things going wrong and Sheffield not being a cardio centre – the nearest being Leeds. All of this was said in front of T, who gradually achieved a complexion in a shade which can only be described as ‘paper white’. She concluded by saying “just my opinion of course” and then breezed away.

T was freaked. Well and truly freaked.

Now, don’t get me wrong, we certainly want to ensure that the op is as safe as possible for T, but none of us (including the Spinal team) were expecting this. Nothing is ever straight forward with the Rileys!

Following this, it was a meeting with a Pain Nurse, who was absolutely lovely, but I think scary heart talk followed by discussing how much pain he would be in almost finished T off. We decided to have a break.

20 minutes and one waiting room picnic later, T had regained some colour and was ready to go again. This time, we were off down to SATU!

Now I would love to explain what SATU stands for, but I have the memory of a goldfish and forgot to write it down. So, for the sake of the blog, it shall hence forth be known as the ‘Stick And Tickle Unit’.

You may recall, that due to T’s Friedreichs Ataxia, spinal tracing during the operation is almost certainly going to fail, meaning that the surgeons cannot track the health of the spinal cord during the procedure. We were invited to test a new and revolutionary machine which may be able to assist with this. We of course said yes!

T is Patient 1. First ever patient to have this monitoring tested on him at Sheffield Childrens Hospital. What an honour! It is a truly incredible piece of equipment. Rather than tracing the spinal cord directly, this new monitor tests the nerve conduction from the brain to the rest of the body. Small conductors are placed across the hands, feet and legs, and then a ‘coil’ stimulates them leading to the nerves reacting. A perfect way to test nerve function and whether or not the spinal cord is working correctly. Ellie and Alice, our Spinal Nurses, were with us to learn how to use the equipment and the Dr leading this revolutionary new procedure was very excited to see how it would work. This would reduce the risk involved with the surgery immensely.


These wonderful medical professionals, who had painstakingly considered all aspects of this test, had forgotten to consider one very important thing. T is the most ticklish human in existence. Trying to get those bloody conductors on his feet was like a Krypton Factor challenge. It was somewhat like how I imagine trying to put socks on an octopus, who is in labour, would be. Legs everywhere and lots of encouraged, controlled heavy breathing. But they managed. Just. And T didn’t kick anyone in the process. Hurrah!

The procedure itself is entirely painless. T said he could ‘feel something’ but it wasn’t causing him discomfort. The staff repeatedly checked that he was ok throughout. It was fascinating to watch. You can just see the ‘coil’ in the second picture, being held under T’s elbow.

The initial stimulations worked really well. However, even on full power, there was no reactions between T’s brain and his legs. Although this has not yet been confirmed, myself and J do not need to be Drs to understand that this means it won’t help in the surgery. I allowed myself to get far too hopeful at the beginning of this test, when the initial strong reactions were coming through, so when they stopped I found this extremely difficult to take in and accept, and had to take myself outside for a moment to compose myself. T was completely oblivious as to why this test was taking place and he did not need me indicating that it was anything to be worried about. Luckily, I have recently become allergic to everything in the World, and so red eyes are currently a common feature of my face!

Although this new equipment won’t help T now, it will help lots of other children, not only in surgery but in terms of tracking general nerve conduction. I still remember vividly how horrific the original nerve conduction test was that T had when going through his diagnosis process. Watching T receive repeated electric shocks, whilst fully awake, is something that will live with me forever. It was, and still is, the worst and most horrific testing I have ever witnessed. I am so thankful that no child, or parent, will ever have to experience that again.

Following this test, it was off to see a Junior Doctor to give T the once over. He was chatting to T, making polite conversation. T managed to give the impression that we feed him nothing but McDonalds chicken nuggets**… cheers T. Just what we want the medical professionals to think.

Our final trip of the day was to see the ward where T will be staying. He is likely to be in hospital between 5-8 days, if all goes well. 24 hours in the High Dependency Unit, then onto a ward if he is well enough. They are going to try to give T a private room, which has a pull out bed. I am going to be staying with T, and J will ferry backwards and forwards between us and Squidge at home. There is a parents room with a fridge and tea/coffee, microwave etc and the whole area is bright and welcoming. I’ve probably stayed at worse hotels to be fair!

The surgery itself is spinal fusion. T’s spine will be straightened and then secured in place to a rod. As he grows and heals, his bones will grow around the metal, fusing with the fixtures. It’s amazing!

Later this week it was a trip to Leeds to see the Cardiologist. Thankfully everything is still looking stable and so hopefully this will put the Anaesthetists minds at rest.

Finally, on Friday it was a video consultation with Mr Mordeca – T’s Ataxia specialist. He noted some improved brain activity since T’s last MRI. We have no idea what this means, but we’ll take the word ‘improved’ anytime!!

We have some further appointments coming up, and we need to sort out the logistics of work, childcare etc. It has to be said that everyone – family and friends, mine and J’s employers, Squidges nursery, T’s school, have been wonderful and incredibly supportive. It’s going to be a tough few months in camp Riley – particularly for our T, but we will get through it!

Now if everyone could now just send positive Anaesthetist vibes that would be cracking. I wonder if she likes brownies…

I’ll leave you with a few pics from recent happy times.

Take care,

L and The Rileys


*One of our lovely nurses was chatting to us and mentioned that she has to pay £18 PER DAY to park at work. How ridiculous and unfair is that? And Rishi wonders why there are strikes…

**We occasionally let him have a hamburger or pizza. We’re not completely irresponsible.

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