Two years ago…

Day 25: Autism Awareness Blogathon (ANZAC Day)

Two years ago today I was in surgery. I put my life in the hands of a remarkable surgeon. You will see why I think he is so amazing and I have a hunch that you will think he’s pretty amazing too.

I was in for a back reconstruction. Yes folks, I’ve got two titanium rods and 26 rather large screws connected to my spine. They go from T8 (between the shoulder blades) down to my iliac vertebrae and also into my hips. Contemplate if you will, the kind of surgery this might involve…not pretty. In fact it’s kind of nightmare’ish. So getting my head in the right place was going to be crucial.

So how do you get to the point of needing surgery like this? I have scoliosis. For the most part, since it was discovered when I was in my early 20’s I have been able to manage without too much of a problem. It certainly didn’t stop me from travelling the world, working at crappy jobs where I had to be on my feet for many hours or even from going out and dancing the night away in high heels.

As you get older, these things seem to become more of an issue. I went from having a 26 degree curve in my 20’s to a 48 degree curve in 2005. That’s when I had my first back surgery in an attempt to create a bit more space for the nerve that connects my spine to my right leg. This was an attempt to deal with the issue in the least intrusive way. But by 2010 the pain was back and getting more & more unbearable, I couldn’t stand for more than about 10 minutes – so waiting in a line to go to the bank or get your groceries was very painful. I was always on the look out for somewhere to sit down, somewhere to lean, anything to avoid that searing pain and numbness.

So I went back to my surgeon dreading the news he was going to tell me. Not knowing how that would impact on my life and my responsibilities. My curve was now at 80 degrees. It’s hard to imagine your back doing that and yet you still go on with a relatively normal life. I think my pain threshold was quite high. I was used to chronic pain and just got on with it. But something had to change.

When my surgeon said the next step was to have the spinal rods inserted, I wasn’t surprised. When I asked how long the recuperation period was and he said 12 months, I burst into tears. 12 months! How on earth was I going to manage this?

I asked for a 6 month lead in to my surgery date. I was lucky. I was able to prepare myself by losing some weight, organising my life, getting my head around what I would be in for and doing everything I could to make this time easy on the two little boys I had in my care.

Somehow, I had to work out how I could deal with a 12 month recovery plan, which included 3 months of no lifting/bending etc, while also continuing to care for my little boys. L was 2 almost 3 at the time and the other was a 9m old pudding headed darling who we called ‘little bubba’ (I’ve never been good at nicknames!). But if anyone out there is familiar with Family Guy, then little bubba looked just like Stewie.

Calling on my years of experience in managing projects, I put a plan together. I’ve got a reasonably large family and a pretty good network of friends. The only problem is, all my siblings and most of my friends live far, far away.

The plan I hatched was to ask everyone I knew to donate a week to come and stay with me and help to look after me & the boys. It actually worked out pretty well and after much to’ing & fro’ing I had the next few months sorted. Backing me up and providing the all important care of the boys while I was in hospital (10 days) and the first week out was my dear old Mum & Dad.

I was in a good head space going into the hospital. I was as ready as I would ever be. I just had to hand my life over to the surgeon. I was in surgery for 8 hours and when I came to in ICU it took a few seconds to remember what had happened. But then the pain kicked in, quickly followed by more meds.

There were a couple of nurses looking after me and both were from India, so they spoke to each other in their language and as I drifted in and out of consciousness, I couldn’t work out where on earth I was – what country I was in – it was very confusing. I was there for a couple of days before they moved me into the coronary ward. Right towards the end of the surgery my heart started playing up and almost stopped. I almost gave my poor surgeon a heart attack! So I came out of surgery with an additional cardiovascular specialist.

I didn’t want to worry my little boys but there was nothing I could do to prepare them for my absence. My days in hospital were challenging to say the least. I was on a lot of drugs, very strong pain killers, quick release for break through pain, slow release to keep me just over the line, something for the heart, stuff to keep my system moving, every time I woke up I had to take another handful. I didn’t want the boys to see me in pain and not able to reassure them, so I told my parents not to bring them in.

On about the second last day they disobeyed me (!!) and brought them in to see me. It was amazing to see little L walk through the door, not knowing that I was in the room. When he saw me, he nearly dropped to the floor in shock. He couldn’t believe it was me, he was so relieved. I asked Mum to put him up on the bed beside me. He laid down and very carefully cuddled up beside me and within a few minutes had fallen into a deep, deep sleep.

Something had happened while I was going through this intense experience. I knew it was going to happen and I knew I couldn’t be there for it. I had to send my mother along instead. It was the appointment at the hospital when, after 6 months of observations and information gathering, the doctor was going to let us know L’s diagnosis. I was not surprised when I was finally able to check with my mother on what they had said. Yes, it was autism.

a composite photo taken during surgery

 

rods & screws

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10 thoughts on “Two years ago…

    • I wouldn’t want anyone else to go through it but I’m glad I did. I feel about 15 years younger than I did before the surgery (not 20, not 10 – 15 haha!) Living with chronic pain is really horrible and now – it’s basically gone. If feels amazing. And – I’m 3 inches taller than I was! How about that for a secondary benefit?

  1. WOW!!! That is some serious back reconstruction! I also have scoliosis. I had no idea about it until I was 44. I was having back pain and some imaging was done. They called me back to take a look at it and I literally chuckled and asked if they were kidding me: my spine—viewed from the front—should have been strait up and down, but it looked more like a question mark. I always thought my back muscle was more developed on my right side from being right-handed and doing a lot of physical work. But it wasn’t muscle; it was my spine a few inches off center. I had no idea!

    WHAT A POINT IN TIME to have found out about L! It’s hard to imagine having any more than this on your plate with you learned of the diagnosis. Wow!

    • It was an incredible time – so glad it has passed now. The news of L’s diagnosis was not a surprise as it is for so many people, but it certainly is a life changer. No longer dealing with ‘developmental delay’ and head first into autism world. We are lucky in Australia that autism is actually reasonably high on the political agenda (or it was anyway)

      • sorry, didn’t quite finish my line of thought…(rudely interrupted!!) and when a child is diagnosed with autism they receive a package of support to assist with early intervention up until the age of 7. This has been an enormous help with all the costs associated with provate therapy and attending specialist early intervention services.

  2. What an amazing story. I can’t imagine living for so long with that kind of pain or how brave you were to have such an intrusive surgery. It seems as though it was worth it in the long run.

    I do love the end of your story — how L curled into bed with you and fell asleep. I can imagine the relief he must’ve felt at seeing you and feeling you near. Precious.

  3. Pingback: Snap & Patience | love many trust few

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