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!)
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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.