Friday, 17 April 2015

So much has happened...

It's so long since I last blogged here and so much has happened. In my last post we were nervous about a trip to Cardiff to see the consultant about H13's spine.

We were right to be nervous. That was October 2013 and trips to Llandough Hospital soon became the norm. X-rays showed that H13's back was forming itself into an S-curve - a severe scoliosis. Surgery was inevitable and eventually last year we found ourselves in University Hospital Wales for H13 to have a quite massive operation.

For one so young H13 faced so many challenges. She had the operation aged just 12. She had to consent to it herself and confirm she understood that a complication of surgery could be - unlikely, but could be - paralysis, but when your spine is tightening at both curves of an S, you can't really say no.

The operation itself took five and a half hours, plus a further three hours to come round from the general anesthetic and the massive amount of morphine required to relax the spine enough to allow the surgeons (there were at least three of them, plus two anesthetists and various nurses) to straighten out the spinal kinks. The surgeons installed a rail and a rod, the full length of the spine, plus 19 titanium screws (which cost a mind-boggling £550 each. I'm glad we didn't have to pay).

There there was a stay in the high dependency unit - just overnight, H13 is made of really tough stuff - and four days in a separate room on the children's ward. I stayed with her 24/7, sleeping on a sort of rock hard armchair bed thing alongside her hospital bed and smuggling coffee onto the ward (or I'd have gone nuts!)

My sketch of H in her hospital bed - I sketched to pass the time while she slept.

The nurses were amazing, astonishingly so. Ditto the physios, who had H13 up and walking in three days, then measured her to find she'd grown in height by two and a half inches. There were fun bits (the pre-med which made her laugh constantly, then afterwards standing up for the first time and finding that a) she was nearly as tall as me and b) that she looked 'normal' now) and there were awful times - the eerie screams of sick children in the dead of night, the tiny baby fighting for life in the HDU, the removal of the two wound drains.

We went home on the Friday, a record time for recovery considering the operation had only been on the Monday; scoliosis patients normally stay in hospital seven to ten days. Brian drove between Pembrokeshire and Cardiff almost every day which cost a fortune in petrol. It was much easier back at home (I could get food to eat, that was a good thing!) H13 started eating again too (it took two weeks, but her appetite came back eventually). We spent the summer watching films, including a binge-watch of the entire Twilight saga. We managed occasional trips out and spent a weekend in Devon with friends, but it was tough as H13 tired easily.

H13 went back to school in September, part-time at first, but she sometimes didn't survive a full day. Once I had to rescue her after she was knocked into the wall by a couple of boys having a mock-fight in the corridor. But she got stronger and missing days of school didn't affect her as she proved by getting excellent results in her Christmas exams, including 100% in both parts of her science exam, and over 90% in pretty much all of the others too. We're really fortunate in that her teachers allowed her to decide what she could cope with, didn't panic when she missed lessons and trusted her to keep up with the work.

The day before the operation H12 (as she then was) ran the Race for Life in Haverfordwest. She plans to run it again in June this year, as a sort of full stop to a difficult 12 months and to demonstrate her return to fitness.

* This post has been read and approved by H13.


  1. H13 is a star... I think you all have been, in different and supportive ways. I remember when we saw H13 soon after you'd returned home from hospital and I couldn't believe the gain in height. Amazing, and truly astonishing what they can do nowadays. Well done to H13 for all Christmas results... astounding. And I love the school too - there isn't a better one in my mind. G13 'is flying' apparently and I put it entirely down to the family atmosphere, the caring ethos of the school and of course the teachers. x

    1. Yes, I agree totally about the school - I know how astonishingly well G13 is doing too - I think H might have got lost in a different school under these circumstances.

    2. Yes... sadly being 'lost' in the wheels of bureaucracy at another school could be true. I am so glad all turned out as well or even better than expected for H13 - it's a great testimony of your support. H13's inner strength saw her through and the whole experience has just made her stronger - except when there is a spider in the room ;) Then they ALL run.

      G13 <3 H13!

    3. Ah yes, spiders have the ultimate power! :D

  2. My goodness, what a time you've had of it. Splitting your living arrangement - albeit temporarily - between Cardiff and Pembrokeshire must have been difficult and tiring enough without the trauma, for all of you, of H13's op. All of you are stars, but especially H13 whose courage and resilience is awe-inspiring. Hugely well-done, H13, may you go from strength to strength. And how lovely too, to hear praise from you and Lins for the school.

    I've missed you here and it's lovely to hear your news and a success story, but, I love, love your Pinterests boards which are so full of beautiful and inspiring pins!

    Very best wishes to you. Cx

    1. Thanks Chris. I found I was completely unable to write about it (or anything else) from the first visit to Llandough hospital in October 2013 and until now. There's nothing worse than watching your child being brave. Pinterest has been a bit of a life-saver - there's nothing like pretty things for adding cheer, especially when you're too tired to do anything else!

    2. Very tough indeed - no wonder it takes time to process. Your Pinterests boards are a joy - I love looking at them when I'm a bit down in the dumps. x

  3. Good grief! You have all really been through the mill and H13 is an absolute STAR for being so brave and - bless her - for running the Race for Life and about to do it again. I take my had off to her.

    My best friend has a severe scoliosis of the spine, but it wasn't discovered early and although she had a similar operation to H13, she was in her 40s when they did it, for obvious medical reasons as she was very lop-sided by that point. It hasn't stopped her living life to the full, including riding (though her consultant may have had kittens if he'd known).

    Well done to all of you - having something so traumatic done to your child (or sister) is life-changing and emotionally draining.

    Give Itsy a cuddle for me (and a scratch!)

    1. Interesting to hear about your friend, I've heard about a few adults now who have had the operation. H13's starting to talk about riding again, which is lovely because at one point she was very much 'never again'. Gave Itsy a big cuddle - there's brown hair everywhere!

  4. Bravo to you and all involved in the successful result of H13's operation. It sounds like lots of love contributed to her recovery.

    Thank you, H13, for approving this beautiful, moving message. xo


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