Happy Summer from The Riley’s! (I use the term ‘Summer’ in the loosest sense given the fact that I’ve had on summer dresses, winter cardigans and raincoats in the past week)
Apologies for the delay in this post, as you may have seen from our social media pages, the past few months have been a bit of a crazy time.
We spent the latter part of May and beginning of June in Sheffield Children’s Hospital, as T had his spinal fusion surgery. I promised I would go into more detail about everything once we had had time to reset and recover so, strap yourselves in – it’s gonna be a long one today!
Firstly, just to alleviate any anxiety, T is doing really well. Particularly considering most of his organs are still re-inflating and he has £5000 worth of titanium in his spine. He is back to full teenage angst. Now that we know how much his spine is worth however, the option of a trade in/part exchange is now very much on the table if he becomes overly stroppy.
Secondly, Sheffield Children’s Hospital is full of wizards and super-humans. I honestly do not think there is anywhere he would have received better care. The staff were outstanding in every sense, and we cannot speak highly enough of every individual who contributed to T’s journey.
Thirdly, I have 100% stayed in worse hotels than that hospital. It was ace! T had his own room (barring a stint in HDU – but more on that later), it had en-suite, tons of storage and a pull out sofa bed for me.
We were asked to go in the night before the surgery, as it was going to be a very early start the following day. Once we had ‘checked in’, the staff pretty much just left us to our own devices, which was nice and allowed T time to settle in. J dropped us off, and once he had left I gave T the option of going out exploring for some tea, or ordering in. We looked at every possible type of cuisine Sheffield had to offer – and there were soooo many good options! After an hour of perusing, T chose… KFC. Now I love a hot wing as much as the next person, but I was a tad disappointed that he didn’t want to explore any of the awesome independent food places. Hey ho, I wasn’t having my spine ripped apart, so I wasn’t really in a position to contest it!
T managed some sleep, more than I did, but the staff had helpfully put us at the end of the corridor so it was quiet and peaceful. The morning of the surgery, I think I was awake from about 4am. T however, was in full teenage mode. Even a large scale major operation could not rouse him. He was still asleep and refusing to wake up when J arrived back, and we more or less had to wrestle him out of his blankets. His Anaesthetist (who was ACE) popped in and gave T the option of a sedative before going down to Theatre. T was happy to accept this, and chose the maximum dose, meaning that he would likely be extremely sleepy before even leaving the room. We also had a visit from Mr Brakewell (still the best name for an orthopaedic surgeon ever) and his assistant surgeon, Rav. They put T (and us) at ease and again talked through the operation.
We took a final pic of T’s back, so we could compare post surgery, and helped him into his gown. He was feeling positive, and surprisingly calm. I was fake smiling like a cheshire cat, completely over compensating for my inner turmoil, and chatting absolute nonsense to anyone who came in the room. Totally calm, a picture of serenity…. in opposite world.
Shortly before 9am, they gave T the first part of his 2 part sedative. Which he immediately threw back up. Not ideal. After a 5 minute vom-fest (which, to be honest, did calm me down a bit. Nothing like a bit of puke to put you straight back on track. I think holding the bowl distracted me. Not that I wanted my son who was about to have major surgery to be sick, but, you know, it did help) and then it was part 2, up the nose, for the second sedation. This one hit IMMEDIATELY. One minute he was awake, the next he was unconscious. Had we known just how effective these were I think J and I would have snaffled some.
We were allowed to walk with him down to Theatre, and then I went in with him as he was put to sleep. Well I say ‘put to sleep’, he was already out for the count when he got in there, so it wasn’t quite as traumatic as I thought as he genuinely had no idea whether I was there or not. The last thing he said to me (pre-sedation) was “please promise me you won’t cry Mum”. So I didn’t. I came close! But I managed to hold it together.
Then ‘the big wait’ started.
As T would be going straight to the High Dependency Unit following his surgery, we had (quite rightly) been evicted from his room on the Ward. We were told that we would be phoned when the surgery was over, and that we should try to get out of the hospital for a while to kill some time as it was unlikely that he would be out before 5pm. And so, we did.
I had seen a sign driving in to Sheffield for some ‘Botanical Gardens’. I suggested to J that we go for a walk there. The sun was shining and, Google Maps in hand, we set off. We walked for about 2 miles, before realising that that we were effectively walking in a large circle and that the Botanical Gardens were, in fact, 5 minutes away from the hospital in the opposite direction. You can see how well our brains were functioning at this point. Determined to see some decorative foliage, we plodded on and found the gardens, which were indeed 5 minutes away from the hospital in the opposite direction.
Now if you enjoy a leaf or water feature, I can highly recommend Sheffield Botanical Gardens! We did walk around them in a sort of daze, but they were beautiful non the less. After a stroll and a tactical bench sit, we decided to get some lunch. After this, my anxiety well and truly took hold and, despite it only being 12.30pm, I wanted to head back to the hospital.
As we were effectively nomads by this point, we sat in the Parents Room at the end of the Ward. The morning had passed relatively quickly (probably due to our Dora the Explorer antics), but from 12.41pm, time more or less stood still. I think it was the longest afternoon of my life. We bounced between trips to the Co-Op at the end of the road, and the Parents Room. Both J and I had brought our work laptops, but I couldn’t concentrate on anything. Except, arrow-words. My lovely colleague and friend, Kelly, had given me a hospital care package of trashy magazines and holy moly, those Take A Break arrow words got me through. Thank you Kelly! xxx
By 5pm we still hadn’t heard anything. Just when I was on the verge of hysteria, Rav (2nd surgeon) appeared at the door. I nearly jumped on the poor bloke. He informed us that the operation had been successful, and that T was in recovery. I hadn’t realised until he said this that I had been holding my breath. I remembered to breathe again, you know, so I didn’t die, and then we followed him downstairs. I asked Rav if T’s legs were moving. He said that they hadn’t been able to get a response so far, but that it was early days. This was one of the things I was most anxious about pre-surgery. You may remember that T was at a much higher risk of paralysis due to the lack of spinal tracing. Rav left us in the recovery waiting space and went to see if T was in the correct area for us to see him.
More waiting.
Rav appeared again. We couldn’t see him just yet, but, his legs were moving. I sobbed. I know I promised T I wouldn’t cry, but I have never felt relief like it. He was safe. He could move. It was OK.
A few moments later my new best friend Rav was back again. He told us a little more about the operation. The team had been expecting, and had prepared for significant complications. T’s case was tricky, and throw in an additional heart condition and it was risky business. However, his heart was perfect throughout. No niggles. Every single thing went as well as it possibly could. The tracing doctor had even managed to pick up some spinal tracing! By analysing an MRI scan T had had as part of his Ataxia monitoring, the Doctor was able to pin point a specific angle to send the current into T’s brain to most effectively hit his nerves. Although he wasn’t able to have a full spinal tracing, it provided some, which was more than anyone was expecting, and beyond helpful to the surgical team. This new method will now mean that more people can receive tracing in this way and it will reduce the risk for other patients moving forward. T’s case will be written up for other professionals to reference. Absolutely incredible. I will say it again, Wizards and Super-Humans.
We were eventually allowed in to see T, only to find him replaced with a very pale (half dead looking) version of Kylie Jenner. Now Mr Anaesthetist had warned us that T’s lips may swell a little due to the pressure of being face down for 8 hours straight. However. He was full puffer fish. His lips were bigger than his face. He was also the whitest shade of pale. He opened his eyes briefly, long enough to see us, but then quickly drifted off again.
After some time in recovery, we were moved up to HDU. Once the hand-over was complete, J headed home to see Squidge, and I settled onto my chair for the night. The Dr on HDU was initially concerned about T’s colourings, however I reassured her that he had unfortunately inherited my albino-esque skin, and so being pale was just his lot in life. After about an hour though, things took a dramatic turn downhill as his heart-rate and blood pressure dropped dangerously low. The cast of Greys Anatomy appeared around his bedside and they injected him with some counter-acting medication for his morphine. This caused T to wake up a little more, and take in more oxygen. After a rollercoaster couple of hours, he stabilised in the early hours and then randomly, he woke up. Our conversation was an interesting one. He was completely off his face, and was rambling like a drunk person post tequila. He kept asking where his Auntie was (shout out to Bear), and demanding to see her immediately. He then asked for his iPad, and told me an interesting story about a Hotdog. He was asleep again 10 minutes later. The nurses kept a close eye on him throughout the night, checking his obs and movements every hour.
HDU was a humbling experience. I realised very quickly, that most of the children (nearly all of whom were babies) had been in there for a significant period of time. The HDU was their home from home. The staff on the HDU ward could not have been any more caring or attentive to those babies, and the parents greeted them like extended family members. Some of the bed areas were decorated, indicating particularly long stays. The little girl in the area next to T, had birthday balloons surrounding her cot. She had celebrated her first birthday there. My heart went out to them all, and their families, who must be going through unimaginable experiences.
The next morning T remained stable (hurrah!) and he was making much more sense (far less hotdog talk). Mr Brakewell came in to see T before his rounds and was pleased to see him awake and communicating. Something which did raise concern though, was that T was unable to move his left arm. We had spent that long worrying about his legs, we didn’t even consider his arms! It was puzzling because he could move his shoulder, and he could move his hand (albeit in a limited manner), but he could not lift his arm, nor bend it. Mr Brakewell explained that the nerve which controlled that particular part of the arm had not been touched in any way. He was unsure why there was loss of movement, stating that it was likely bruising to the nerve due to the position T had been laid in for so long. If it was bruising, hopefully the movement would come back over time. This could, however, take weeks, months or even years. If it wasn’t bruising it could be permanent damage. We were hoping this was not the case. The only way to tell for certain would be for T to have an MRI scan. However, this would mean T lying flat on a hard surface for an hour, which would be extremely uncomfortable for him so soon after surgery. In addition to this, regardless of the outcome, there is nothing which could be done to fix it. We decided to leave it for a few days, and then reassess.
Later on, T had stabilised enough to move back up to the ward. We checked back into our home for the next week. T’s recovery continued to move forward positively, and it was lovely and reassuring to see him getting stronger, and staying awake for longer, every day. His arm continued to be a pain in the ass, but he was making small gains. He had one or two low points, which were hard to see. There were moments when the magnitude of his surgery hit, and the lack of movement in his arm frustrated him beyond measure. But, on the whole, he was positive and made the nurses laugh with his dry sense of humour. We started re-watching all of the Harry Potter films and I did his head in by trying to get him to eat and drink more. J came to visit each day, and then headed back home to take care of Squidge who, despite being very good, had decided that there was not enough attention heading his way and that this would be the perfect time to bring a tummy bug home. Poor J then had a lovely few days of not being able to come to the hospital and instead being covered in sick. You honestly can’t write our luck sometimes! Only the Riley’s!
After just over a week, T had made enough progress to be able to continue his recovery at home. His arm continued to be weak, but was getting stronger each day. On the day he was discharged, we took another photograph of his back as his dressing was being changed. I have placed it along side the first photograph, and I am sure you will agree that it is nothing short of incredible. He’s also about 7ft tall now, and costing us a fortune in new clothes.
His scar is neat and quite the war wound!
He’s been recovering at home since and, on the whole, has been doing great. We have had a few bumps in the road – his energy levels are still very low and he tires quickly. He is still experiencing nausea, and sometimes sickness, due to (what is believed to be) ‘postural hypotension’. Also, he is 14; which means that all he wants to do is fester in his bed and play Football Manager. Trying to get him to do something other than this is a challenge and I am having to wear my ‘naggy Mum’ hat more than I would like (although I do look fabulous in all hats). He’s also been a bit lonely. He managed a few hours at school for a couple of days before the summer holidays, but I think it will do him good to be back with his friends in September. He’s had some low times, which is to be expected after everything he’s been through, but he has seemed a bit brighter in himself over the past couple of weeks.
We’ve been back to Sheffield and Mr Brakewell was very pleased with his recovery, and the fact that he’s managing without pain relief. Well done T! You can see below his comparative before and after x-rays, and also the large amount of titanium in his back!
We’ve managed a few trips out of late, the most recent being ‘Alpaca Walking’ for Squidge’s birthday (thank you JP for the voucher). This is every bit as random and fabulous as it sounds. We took our alpaca, Brenda, for a walk. T was chief lead holder and we had a lovely time!
Now I say ‘lovely time’. It was lovely, by and large. I did, however, underestimate just how tiring it is in blazing sunshine to push a large man child in a wheelchair 2 miles whilst wrangling a 4 year old (Squidge is 4!!!) and an alpaca. I kid you not, the sweat was DRIPPING from me. There’s a vision for you all. We also, in true Riley style, had a small drama.
Post walk with our Bren, we had the chance to feed some of the animals on the farm. I parked T up on a path, and turned away for literally seconds to help Squidge get a food bowl. I heard an almighty crash and turned to see that T had fallen backwards and his chair had overturned. He was shaken, sore and upset (also not ideal when you’ve recently had spinal surgery to fall onto said back). He is, thankfully, ok but we cut the trip slightly short to get him home to rest. On the way home we discussed just how he had managed to fall when he had been parked up so safely. T told me that when I had turned away, one of the animals was trying to dangerously head-butt his legs through the fence, so he had moved backwards away from it and fallen off the edge of the path. Makes sense to move away from a scary animal. Or it would, if the scary animal in question was not this:
Clive the ‘killer’ baby goat. He’s never going to live this down. I’ll make sure to keep him away from any terrifying hamsters and gerbils moving forward.
So, that’s us. A rather long update. It’s been a tough few months truth be told, and I’ve finally admitted that I can’t just keep going and pretending everything is fine. I’ve started some counselling, which I think is a positive thing for me. People often ask us how we cope, and the truth is that sometimes we don’t. But we have a lot to be thankful for, and I’m not afraid to ask for help if I need it.
Thank you to everyone who sent well-wishes to T, and to us. We are so grateful for all of your support.
I’ll leave you with some pictures of some recent happy times.
Love,
L and the Rileys
xxx
p.s. fair play if you made it to the end of this monster post! Gold stars all round!
The Life of Riley's 
You’re all just simply amazing – much love
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