CHAPTER 10. 03.Jan.2023
Hold My Hand: A Journey Back to Life
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If you have never heard of necrotizing fasciitis aka flesh eating bacteria then please do go and read this post - it may help save your life or someone else’s one day… NECK-re-tie-zing FASH-e-i-tis... Say what?!
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OPERATION #5: CUNNING PLANS
I waited that morning with bated breath. It was another operation day. Dr Doctor, my surgeon, had a ‘cunning plan’ – his exact words the day before. He planned to get me on the operating table and then pull in help from the plastic surgeons. He hoped that they could use their skills and ingenuity to find a way to close my leg without having to take a skin graft from my other leg. He seemed so genuinely excited about his plan.
Authors Note. Skin grafts are an incredibly common outcome for patients with NF. The wounds tend to be so large that the body has no hope of being able to heal itself without additional intervention. As a result, patients must endure the impact of further wounds – created purposely this time – to take healthy skin from other location(s) on their body to transplant to the affected area.
But then you have even more wounds to heal when your body is already at its limits. More discomfort to endure. And then there’s the lifetime of care that a skin graft requires, plus the challenges it brings along with it. More on that later. If I could avoid one then I’d be very lucky.
There were two possible plans in play:
Plan A – check my leg, put the drain back on, and send me back to my local hospital where this had all started. Leaving it up to the plastic surgeons there to close my leg over the next couple of weeks and ultimately send me home.
Plan B – if my leg looked good then they attempt to close my wounds, with help from Plastics, and then send me back to our local hospital for a week of rest and rehabilitation before going home.
Initial bets were on Plan A and had been for a while. Plan B felt like a bit of a dream and was likely overly optimistic.
But we had to wait. Wait for confirmation that my 6am blood tests were OK – my infection markers continuing to decline. Wait for confirmation from the central heart monitoring team and the cardiologists there that my heart was up to another surgery and less likely to down tools and stop again.
Finally, we got confirmation – green lights from everyone. “The man from Del Monte – he says yes!” I shrieked. A phrase from an old TV advert for fruit in a tin that definitely dates my age for those who remember it.
I had a huge grin right across my face. My arms waved wildly in the air as I did as much of a happy dance as you can in a hospital bed while attached to a bunched of wires and tubes. I was so happy.
Finally, I was freed from the multitude of wires that had kept me attached to the heart monitoring machines. It felt so good.
And to add icing on the cake the nasogastric tube that had plagued me, from the minute it slid up my nose and down my throat, was pulled out. I can’t even try to express how much I hated that tube. And its parting shot as it snaked its way out was to give me a repeat taste of the blueberry protein yogurt I’d had for breakfast.
It was four days since the previous operation where I saw everything through nightmare goggles – dark, black, and scary – as they rolled me in my bed towards the operating theatre. As they rolled me down to the same suite of operating theatres – it was light, bright, lots of white, and lots of glass. I could see the sun was shining. I was in the same place, yet it looked (and felt) so different.
In the theatre I was greeted by smiley happy team – every one of them a man. They were warm, kind, and cheerful.
After the last operation I’d become claustrophobic at just the thought of the oxygen mask being put over my face before they knocked me out. A result of it being held down so forcibly. I explained that to the anesthetist sitting by my head. “Would you like to hold the mask yourself?” he asked. I couldn’t say yes fast enough. That tiny gesture meant so much.
Once more I slipped quietly away into oblivion.
I remember waking up from the operation. I tried to crane my neck and peer down at my leg. My first question: “Did you manage to close my leg?” The answer made my day. It definitely made my year. “Yes, we did,” came the reply.
The operation had gone smoothly, a joint venture between Orthopedics and Plastics just as the Dr Doctor and his colleagues had hoped. And there had been no problems with my heart this time.
In my medical journal, written after the operation, the medics confirm Plan B was a “go” – my leg was indeed closed, and they planned to send me back to my local hospital the following day for a few days rest and rehabilitation before going home.
The Plastic surgeons had excelled themselves using all their skills to save me from having a skin graft on my leg and yet another wound to then heal on my ‘good’ leg. They really had taken a ‘hatchet’ to my leg – in this case a special type of wound closing – and had left me with the joy of a ‘dogs ear’ or a ‘donkey ear’ as I have heard some people refer to it.
Authors Note. A ‘hatchet’ close in plastic surgery terms is a flap of skin that can be created and that makes use of loose skin close to the wound that has its own blood supply. They can then twist and turn this flap to help close the wound. It turned out that my slightly more generously padded thighs – thunder thighs as they have been referred to in the past – were valuable after all and saved me from needing a skin graft.
A ‘dogs ear’ is a little different. It’s a ‘pucker’ of excess skin and fatty tissue at the end of an incision line once it has been closed with stitches. It basically looks like a pointy lump coming out of your skin. They’re common is skin surgeries and smaller ones often disappear within the first few months after an operation as swelling subsides. However, larger ones are a result of excess tissue - these lumps don’t go away on their own and further surgery is required at a later date.
03 JAN 2023 @ 15.54
So she’s awake after todays operation and they have managed to close the wounds on her leg. She’s eating and is in good spirits. She can also get out of bed easier which will help her recovery. Kim
By the time I got back to my room – so relieved that I could now see that it’s always been a room and not a corridor – Mum and Kim were there. They joined the celebrations that my leg was closed and I’d been disconnected from not only the VAC drain, but also almost all the other tubes and wires. The catheter was removed too. All that remained was the line in my neck.
The nurses came to see me with new hospital clothes. I was being promoted from the operation friendly tops with buttons all the way down the front and back to a proper white cotton T-shirt. With no unusual entry points!
And to add to my happiness I also got a pair of (in any other situation truly horrific) white cotton hospital-issue shorts instead of the adult diaper. They looked like some weird kind of men’s Y-front underpants. There was nothing flattering about them whatsoever. We had to take a pair of scissors to the left side to split the fabric so that the left leg hole was big enough to fit over my swollen and bandaged leg.
To me the entire outfit was the absolute best thing I’d ever seen. The height of fashion. I adored it. I felt almost human again.
Now that I was free of all the leads, tubes, and gizmos - my walker and I could be proper BFF’s (best friends forever). Well, maybe not forever, as I wouldn’t be allowed to take it home with me. But forever in hospital terms.
I didn’t have to ask anyone’s permission to get out of bed or shuffle to the bathroom. It was up to me. Only now and again was I tied to the bed while yet more antibiotics were poured into my veins.
Mum and Kim departed and headed home.
Then that evening everything changed. Plan B went out of the window. Replaced by a totally unexpected Plan C.
One of the nurses I knew rushed into my room. She had taken a call in the nurse’s office with one of the doctors – “…if she’s doing OK then she can go home tomorrow…” was the message from the doctor on the other end.
I have no idea who this doctor was – she mentioned a name I didn’t recognize and that I can’t remember. I know it wasn’t Dr Doctor who I liked so much by then. It was someone else.
There is no record in my medical journal of this call – I’ve looked more than once. No name to reference. Nothing at all. Who was this person? What did he know about what I’d been through? And why did he think it was reasonable to send me home in the state I was in?
Why oh why was there no discussion with me (and Kim for that matter) as to whether I was up to this sudden change in plan and whether my environment at home was suitable for the next few days healing and rest?
They’d saved my life. Done their job. It was time for them to move on. At least that’s how it felt to me.
But then again, I didn’t want to stay.
The nurses seemed to gather in my room to celebrate. I felt like I was going to be released from a terrifying prison. I was ecstatic. Freedom awaited. I called a friend, chatting in excited terms that I was getting out and kept her talking until almost midnight – well, it was actually around 10pm but it felt like midnight!
I had asked Kim to bring me a notebook and pen. My writing that evening was like a spikey drunken spider staggering wonkily across the page. Unrecognizable from my usual rounded, flowing, (sometimes unreadable), swirly cursive. I managed to scratch out a list of questions to ask before they released me the following day.
I slept maybe an hour that night. I couldn’t get comfy. I just wanted so much to be in my own space and my own bed without having to ask a nurse for everything.
I didn’t consider it would be exactly the same at home, but just with different actors. I didn’t consider that I was still as weak as a baby and unable to walk more than a few steps. I hadn’t even set foot outside my little room and bathroom. Could I even walk out of the hospital? It was miles compared to the few steps I’d managed so far.
But I couldn’t stop smiling like a Cheshire cat.
I was getting out.
Freedom (I thought) was on the horizon.
And I was going home.
Perhaps.
If this post made you feel something then I’d love it if you would click on the heart and add a comment about what resonated for you – it means a lot to me to hear from each of you.
If you would also be kind enough to share it that will help more people find Hold My Hand and learn more about these awful infections. Maybe one day that knowledge will save a life.
Thank you!
If you missed any previous chapters from the book then you can find them easily on my website – click HERE and it will take you directly to the webpage dedicated to the book where you can read any previous chapters that you might have missed.
Every THURSDAY I’ll continue to share my ‘book in parts’ - Hold My Hand: A Journey Back to Life - chapter by chapter. I’m so excited to finally share it with all of you.
Next week I’ll be posting Chapter 11. 04.Jan.2023 - will I be able to walk far enough to be able to get out of the hospital and make it home?
Much too early to suddenly discharge you surely? Though someone knew how desperate you were to be back home and back to normal !
It sounds like a very sudden rush to discharge you after all you'd been through, Jacqui.
What a painful endurance test. (Again, I'm just glad you are here, able to tell your story.)