Time to Reflect a Little

As we move into week 5 post op I have had some time to reflect a little on our Scoliosis journey and I wanted to share what I feel we have learned.

When Chris was first diagnosed in August 2013 I was horrified by the thought of surgery and scared myself silly looking on the internet to find out about corrective surgery. I vowed that we would do everything in our power to prevent Chris having to go through that and I really believed that Schroth therapy (the specialised form of physiotherapy for Scoliosis) could prevent curve progression.

In fact, I think I pretty much wore blinkers for the first year – pushing Chris to do his exercises twice a day, encouraging him by saying that doing the exercises would hopefully keep his curve under control.  Fortunately neither Steve nor I ever told Chris that the exercises would definitely definitely stop curve progression – we always focused on the fact that they would help balance and strengthen his muscles while he was growing – which hopefully would hold his curve where it was.

Ultimately, his curve did progress and it progressed fast – something that came as a hell of a shock to us all.  But at no point did I feel we had failed.  We had done our very best to support Chris and as time went on it became clear to us that the best thing that we could do for him was to agree to the corrective spinal surgery.

I really struggled to come to terms with it though as it brought back memories of my own upsetting experience of surgery as a five year old child – and hospitals were very different in the way they looked after children then.  I knew Chris would be well looked after and he was also old enough to understand everything himself – indeed the decision to go ahead with the surgery was made by Chris with our support.

And sitting here now, with Chris tall and straight and growing in strength every day, I find myself thinking ‘thank God for the corrective surgery’ that I was so desperate to avoid. We are very lucky that we have these incredible surgeons doing what they do to help children like Chris.  Without surgery his spine would have continued to curve with each successive growth spurt leaving him with a very twisted back and potential longer-term health problems.  I know that no parent wants their child to go through major surgery, but if it is their best option then it should be embraced as the life changing, and I believe for Chris, life enhancing, option that it is.

Finally I want to share what we have learned about exercise and physiotherapy for Scoliosis – it may not prevent curve progression, but it will help your child’s spine to be flexible and their back muscles to be strong.  This makes the surgeons work a little easier because it is simpler to move and re-position a flexible spine than one that is stiff.  And having strong back muscles that are used to being stretched makes recovery much easier for the child.  The surgery moves, stretches and fixes their muscles into new positions and this is what causes a lot of the post operative pain.  If the muscles are flexible they accept their new positions more easily and there is less pain and discomfort for your child.

Chris has recovered at remarkable speed and I think Steve and I can take some small amount of credit for that, thanks to the exercises and stretches we made Chris do in the months leading up to surgery!


Enjoying the Festive Season!

christmas decsWe have had a really lovely family focused Christmas, with lots of gifts, playing board games and relaxing together.  For the first time ever the boys didn’t wake us up at 6am to open their stockings – we had to wait until 9am and then I woke them up!

Christmas lunch was just the four of us and then on Boxing Day my mum, my sister Jackie and her husband Graham came to see how Chris was doing and have lunch with us.  We had a lovely day with them and they were also amazed at how well Chris is looking and how tall he is!

The days between Christmas and New Year’s Eve have been much the same for Chris, resting, eating well, watching TV and playing on the computer with his friends.  He even managed to play a game of ping-pong with me, bending down to pick up the ball off the floor and less then 4 weeks after his surgery.  I don’t think he is going to have any problems going back to school part-time after 6 weeks.

In fact, we have now started to get him doing some of the work his teachers set and he has revised for and sat a Biology end of year test paper and is reading ‘Of Mice and Men’ which is one of his GCSE English books.

I have also found that I now have more ‘head space’ – if you know what I mean.  In the months leading up to his surgery I just couldn’t think about anything else, but now I’m finding that I can…and it feels good!


Removing the Wound Dressing

We are now two weeks post surgery and Chris has been coping absolutely brilliantly. This last week at home with him has been lovely…time to cuddle up on the sofa together and watch movies!  And a friend of his has given Chris their login details to Netflix so he can watch lots of TV while he rests.

He no longer needs any pain relief medication and is starting to move around really well.  I have enjoyed looking after him, cooking his favourite foods and generally spoiling him!  And friends have called round with cards and chocolate for him – I think he’s almost enjoying it – but not the stiffness and shoulder pain on his left side. Hopefully that will improve as time goes by and his muscles get used to being in their new positions.

Today we went to the doctors surgery to have the wound dressing removed and checked by the practice nurse.  She happens to be a close friend of mine so I knew she would take great care of Chris.  The dressing came off well and the wound underneath looked really good – clean and dry with no sign of swelling or infection.  The scar is incredibly neat, just a thin pink line down the centre of his back.  There are still a lot of steri-strips in place and Sarah’s advice was to leave them alone and let them drop off when they’re ready. So, that’s another milestone successfully completed!

I continue to be amazed and inspired by Chris who takes every step of this Scoliosis journey in his stride – very little has upset him and he has been calm and composed throughout.  I am also amazed at how fast a teenage body heals itself and recovers from major surgery.  I wish I knew before surgery what I know now and perhaps I might have been less stressed and anxious about it all ;-)

We’re Coming Home!

Wednesday: This was a lovely day of rest with both Chris and I catching up on some sleep and watching movies.  He is definitely ready to go home now (and even managed to eat a sneaky bowl of chips between lunch and supper!) and Sally is making the arrangements for us to leave the hospital tomorrow.

Thursday: After breakfast I started to pack up our room and carry stuff down to the car.  We seem to have accumulated a lot of bags over the last few days and it took several trips to get it all out of our room.  I also played around with the front passenger seat to try and make it as comfy as possible for Chris, giving him lots of leg room and winding the seat back so that he is in more of a lying down position.

Then we sat and waited for his pain relief medication to be delivered.  It finally arrived about 11.30am and Sally explained the different pills to me and when Chris should take them.  And then we were off!!

With Chris comfortably settled in the car I hit the road about 11.45am and the first thing he said was “I’m hungry – have you got any food?”  Of course I didn’t have anything as we had hoped to leave much earlier and be back home by lunchtime.  Luckily about 5 minutes later we drove past a McDonald’s so I said “How about a Big Mac and Fries?!”  Chris thought that was a great idea so we stopped off and ate a burger meal in the car.

With a full stomach Chris soon fell asleep and slept the first 1 1/2 hours of the journey, only waking up as we joined the A3.  This was perfect and we had a really good run home with no delays or accidents to hold us up.

Steve was there to greet us when we arrived and Chris was really happy to be back home, having a lie down on his bed before settling himself on the sofa to watch TV.  I then unpacked the car with Steve and also had a rest on my bed which felt heavenly after sleeping in a ‘pull down’ bed in the hospital for several nights.

bubble-baths-good-for-skin-1It feels so amazing to be home, with the long awaited surgery finally behind us.  I am looking forward to having a long hot bath and an early night!


Post Surgery – The Recovery Part 3

Tuesday: Chris has felt much better today and the terrible sickness he felt has finally disappeared.  He is now able to walk around the ward quite comfortably and can watch TV without feeling sick.  He did some more exercises and a walk with the physio and we are now talking about when we can go home!

Before we leave Chris has to have another round of x-rays and be able to walk up and down stairs with the physio.  Sally managed to arrange the x-rays for this afternoon so he was wheeled down in his bed to the lift and then to the x-ray clinic where we had a short wait before they repeated the x-rays they had taken before surgery.  I am really excited to see these and Sally has said that we will be given a CD with the ‘before’ and ‘after’ x-rays on it.

After the x-rays Chris had a lovely surprise in the post – a wonderful box of biscuits in a beautiful tin marked ‘First Aid Kit’.  Inside were hand baked chocolate cookies shaped and iced with a medical theme.  They looked amazing and tasted delicious – a really lovely gift from my nieces Isobel and Francesca.

After eating several biscuits…without making himself feel sick…Chris went for a walk with the physio to take the stair test.  He passed this easily walking confidently up and down a flight of stairs.  So that’s it – he has done everything he needs to be able to do before being allowed home!  But, as we have such a long journey home I think we are going to aim to leave on Thursday and give him one more day in hospital to sleep and get stronger.



Post Surgery – The Recovery Part 2

Monday: Today got off to a flying start with a new physio who was even more forceful than the one we had worked with over the weekend.  She arrived at the same time as Chris’ breakfast – a bacon sandwich (that means he is really starting to feel better!).  She said she would return later and then “take Chris for a walk!”.

Sure enough she returned about midday and encouraged him to sit himself up on the side of his bed and then carefully raise himself up to stand.  He did all this remarkably easily and once again I was astounded by how tall he now looks compared to me.  Then the two of them set off at a steady pace to walk a loop round the hospital ward.  I followed behind with a goofy smile on my face the whole time.  His back and shoulders look so different to when we arrived here and he is really beginning to feel better now.

Chris standing 3After their walk we returned to his room and the physio took a few photos of me and Chris standing together to show the difference in height – I think Chris is really delighted by this as he can now look down on his mother – and I’m really not short, I’m about 5′ 7!

Here is my favourite picture of the two of us smiling at each other.  I then sent this to all my family who were equally delighted to see Chris looking so good just 3 days after surgery – it’s amazing how quickly these young teens recover.


Post Surgery – The Recovery Part 1

Saturday: This was a slow day for all of us.  Chris was quiet through the night and still very sleepy when Steve reappeared.  He had had a good night’s sleep at the hotel and a cooked breakfast so he was in good spirits.  Sally, our lovely nurse, took over again in the morning and was very pleased with how well Chris was doing.  His pain scores were really low – 1 and 2 – and he is managing to turn himself onto his side using the rails at the side of the bed.

He also managed to eat a piece of toast for breakfast and is drinking lots of water.  His biggest problem is not the pain, but feeling really sick – even watching the TV makes him feel ill – so he is really just lying there quietly with his eyes closed.  Mr Conlan and Mr Crawford also came in to see how Chris was doing and were very pleased with all his hospital notes and vital signs.

Today the physio also came to see Chris and like most physios she was a force to be reckoned with – giving Chris lots of encouragement to move more and to try sitting up on the side of the bed.  He did really well and with her help he managed to sit up with his feet on the floor.  Then he managed to stand up for a couple of seconds but felt so sick that he had to sit down again quite quickly.  But she was really pleased with how well he managed to move and said he would definitely be walking tomorrow!

This evening I am going to go back to the hotel and Steve will stay with Chris so that I can catch up on some sleep.

Sunday: Both boys had a good nights sleep and once again the nurses are all really happy with how Chris is recovering.  I slept really well in the hotel – in fact I was in bed and asleep by 9.30pm!   Mr Frear the anaethetist came in to see Chris again this morning and as he is coping so well and hardly using the pain pump he has said that Sally could remove this IV line today.  She is also going to remove the fluids IV line as Chris is also now drinking lots of water.  This is a great step forward as it will make it easier for Chris to move around in bed and also means that his body is returning to normal and able to regulate itself again.

Chris with physioThe physio returned and Chris managed to sit himself up on the side of the bed with very little help.  Then he stood up and I was able to see just how much he has grown as a result of the surgery – he must be about and inch and a half taller than he was!

With a lovely smile on his face Chris then walked round the bedroom holding onto the physios arms.  This was an amazing moment and once again I had a lump in my throat but this time the tears were tears of joy and happiness – he looks so tall and straight – I just can’t believe it.  It is such a huge relief to see him looking like this and even managing a smile!

After lunch I took Steve to the station to catch the train home so that he can see Anthony and go back to work on Monday.

The Evening of 5th December 2014

Over the course the afternoon and evening Chris slowly became more awake.  He found the catheter a constant irritation and was suffering from a croaky dry throat.  He had two IV lines attached to him, one giving him fluids and one giving him pain relief and antibiotics. He could drink water through a straw which he did quite often as his throat was very uncomfortable.

Sally was with us constantly, checking on all of Chris’ readings from the monitoring equipment he was also attached to – a blood pressure monitor and a heart rate monitor. She also encouraged Chris to move about a little on the bed even turning him on his side every now and then and supporting him with pillows.

This was the pattern for the rest of the day and through the night.  Steve went back to the hotel about 10.30pm and I slept on a ‘pull-down’ bed next to Chris.  I didn’t sleep much as Sally and the nurse who took over for the night shift came in every hour to check on Chris and make notes in his hospital file.

Chris seemed to be fairly comfortable throughout the night and when asked what his pain score was on a scale of 1 – 10 (with 10 being unbearable pain) his highest score was a 3. The biggest problem he had was feeling sick and this is apparently very common after a long anaesthetic and having spinal surgery that requires you to be lying on your stomach for hours.  Hopefully this will improve over the coming days.

I popped out of his room for a short while to phone my mum and let her know how Chris was doing and the whole family is thrilled that the surgery has gone so well.



Passing the time on 5th December 2014

garden centreWith Chris now in surgery we drove to the garden centre.  It did indeed have a very nice cafe area and we found a table and got some breakfast.  I had a cup of tea and a croissant. Steve had a full cooked breakfast – I don’t know how he managed it – my stomach was in knots!

Anyway, after we’d finished we had a good look round the garden centre and managed to do some Christmas shopping finding presents for Steve’s mum and several stocking fillers for the boys.  All in all we manged to pass away about 2 hours there and then set off to find something else to occupy our time.

Our hotel was in Duxford, just up the road from the Imperial War Museum Duxford.  Steve was keen to see all the airplanes they have on display there so in we went.  They had an impressive collection of airplanes – both fighter planes and commercial – including an early Concorde.  We looked around for about an hour and a half and then went to the museum cafe for a sandwich lunch.  By then it was about 1.30pm and I was getting increasingly anxious to know how Chris was.

As our hotel was so close we called in there and Steve booked in again for the next few nights.  Then we went back to the hospital.  Once we were back in Chris’ room I started to unpack a few things for him and then we sat down to wait.  Within a few minutes the phone rang and it was the Recovery Room nurse to say that Chris was now out of theatre and waking up and we could come and join him.

Sally came to get us and we walked the short distance to Recovery.  Chris was barely awake and looked swollen faced and pale – just as we had been told he would.  We asked how the surgery had gone and the nurse said she couldn’t say, we would have to wait for the surgeons to come and see us.  While we waited they constantly monitored Chris and tried to encourage him to wake up a little and open his eyes.  As he became a little more awake the nurse asked him to wiggle his toes – she lifted the sheet and I felt a huge wave of relief rush over me as his feet moved on the bed.

We spent about an hour in Recovery with him and he gradually came to asking the classic question – “has it been done yet?”  He had no concept of the hours he had spent in surgery and when asked if he had any pain he replied that he didn’t.  The only thing that seemed to bother him was the catheter, which he kept trying to rub and pull out.

Then the spinal cord monitoring expert appeared and said the procedure had gone very well from his perspective with Chris giving strong and consistent spinal cord signals throughout the surgery.  As we welcomed this news Mr Conlan and Mr Crawford appeared and said the surgery had gone well and they were happy with the correction they had achieved.

Shortly after this the recovery nurse said she was happy for Chris to be taken back to his room and (as he was put onto his bed after surgery) they simply wheeled him back to his room.  Sally made sure he was comfortable and then came in and out regularly to check on all his IV lines and his catheter.  The rest of the day just disappeared with Chris slowly becoming more conscious of where he was and the fact that the surgery had now been done.



The Morning of Surgery – 5th December 2014

Today has been one of the longest and most emotionally stressful of my life.  I have broken it up into chunks to make it easier to share.

It began at 6.15am when the alarm went off to wake us up.  I had been awake from around 4am thinking about today and wanting it to be over and Chris to be ok.  As Chris was ‘Nil By Mouth’ from midnight we didn’t bother with any breakfast and simply checked out of our room and drove to the hospital.

On arrival we had to wait for Sally, the Lead Paediatric Nurse, to come and take us up to the ward and the room Chris would be staying in for the next week.  The room was big with lots of windows and a great view of a tower crane (they are currently building a new hospital on the same site).

Sally explained that there would be lots of people coming in to see Chris in the hour before surgery.  They would be:

  • The anesthetist
  • The two surgeons – Mr Conlan and Mr Crawford
  • The spinal cord monitoring specialist
  • The ‘Theatre Manager’ (as in operating theatre!)

The first to arrive was the anesthetist, Mr Dean Frear.  He asked Chris if he had any questions and then explained again how Chris would be given the anesthetic and what pain relief he would have when he came round after surgery.  This included a ‘pain pump’ that Chris could control and self-dose if he needed more pain relief.

The next to appear was the spinal cord monitoring specialist.  He explained that he would be attaching electrodes to Chris that would monitor the signals passing up and down his spinal cord while he was in surgery.  This helps the surgeons to ensure that the work they are doing to move the spine is not compromising the spinal cord in any way.  He attached some electrodes to Chris’ ankles and his head and then took some readings to give him a base level of what was ‘normal’ for Chris.

While he was taking these readings the two surgeons, Mr Conlan and Mr Crawford appeared, both looking very relaxed and confident.  They asked if we had any last minute questions and when we said no they said they’d see him in the operating theatre.

Our lovely nurse Sally was popping in and out during all of this and then came the moment I’d been dreading – she asked Chris to change out of his clothes into the operating gown. He changed in the bathroom and came back in just as another member of the surgical team arrived – the theatre manager.  He was great – very friendly and chatty, asking Chris if he liked football and who he supported.  Then suddenly he said “right let’s get this show on the road – are you ready mate?”  Chris said “Yes” and they all started to walk out of the bedroom.

I quickly gave him a hug and a kiss and said “See you soon!” and they walked off down the corridor to the operating theatre.  As soon as I turned back into the bedroom the tears came and I had yet another quick sob at the thought of what was about to happen to my gorgeous boy.  Steve reappeared quite quickly and said Chris had gone off to sleep very easily and happily and that all we could do now was wait.  We were given an estimate of around 6 hours for the whole procedure and Chris went into theatre about 8.30am, so if all went to plan he would be back in recovery at about 2.30pm.

Sally came back into the room and asked if we were ok and would we like a cup of tea!  I said yes that would be lovely as it would give me a few minutes to compose myself again. She also gave us some suggestions of what to do and where to go for the next 6 hours while Chris was having surgery.  Apparently there is a large garden centre close to the hospital which has a very nice cafe so I think we will go there first.