It's been a hectic few months ... but I suppose that's nothing new!

So the spinal fusion went as well as can be expected, when it comes to Alyssa.  In that the surgery went very well, and the surgeon was happy with the operation being hitch-free.  The post-operative period ..... not so much!  

As with everything Alyssa-related, we tried to predict the unpredictable, and any unforeseen issues which would arise from the surgery.  The surgeon decided that due to Alyssa not feeling pain, he would not use a 'wound drain' (a rubber tube, left hanging out of the wound site, but stitched in place, which allows fluid build-up to drain out), for fear that she would get hold of it and just pull it straight out!  And because she is always so itchy, he opted for 'invisible' stitches, which lie underneath the skin surface.  These are not as strong as outer stitches, but it seemed our best bet.  I'm sure you can guess where I'm going with this .....

The day after her op, the physio came to see her "to get her rolling onto one side, then onto the other side, and - if she felt up to it - sitting up.  You can imagine her face when she came into the room, and found Alyssa sitting up, playing games with the nurses, and myself.  I'd warned her that the normal rules would not apply to Alyssa, and found the physio resistant to everything I said.  So when she saw Alyssa post-op. it was clear from her reaction that she'd assumed I would be wrong.  She was stunned, and just kept repeating "I don't believe it!  I've never seen anything like that before!"  Yeah, we get that a lot!  Of course, then I struggled to get ANY help from the physio team, because they just couldn't grasp the fact that feeling no pain and being up and rushing about - after spinal surgery - was anything but a good thing!  It's true that the norm is to get patients up and about, as soon after surgery as possible, but the reality is always to take it according to the patients' pain limitations.  I couldn't get any of the physio team to understand that she had NO limitations, and would just carry on as normal.  And Alyssa was charging around, bending into positions she shouldn't have been in, lifting things - or trying to - that she shouldn't have been .....  I was sure I was going to have had a nervous breakdown by the time we left,.  Therefore, it was hardly a surprise when Alyssa burst the entire wound wide open again (right down the muscle layer over her spine!), and had to be taken back to theatre, to have the wound closed up again.  All the while, asking if she could go to the park, to play on the swings, the slide, and in the sand!  She was not best pleased when I told her she couldn't do any of those things, because she had a huge hole in her back which we had to stop her banging off of things, and especially to stop her from getting sand in here wound!  She seemed to think we were just trying to spoil her fun.  

I should probably point out here that Alyssa had her spinal fusion done with NO pain relief at all during her operation; then only paracetamol and ibuprofen post-op (because the anaesthetists at this hospital hadn't met her before, and were wary of her not getting anything at all).  So she was prescribed those for the first couple of days after the op, with a view to giving her something stronger by IV, if necessary.  She didn't need the IV meds.  And - when she had to back to theatre a second time - we didn't bother with any pain relief at all.  It was obvious very quickly that she didn't need any!  As the charging around, proved.  She gave the nurses so many frights, with the things she was getting up to, as well as showing that her usual 'lack of balance and co-ordination, mixed with no fear of falling' was still in place!

After the second op, the surgeon put deep tension sutures into the muscle layer of her back, then added skin sutures on top, to reinforce the wound.  And then dressed it with a 'body armour' amount of dressing materials, just to try and stop her getting at it.  And tearing it open.  *shudder*  She did not get at it too much, but enough to make us live in Edinburgh Sick Kids hospital for a full month, and delay the wound healing for just over 3 months.  I was beginning to think we'd never get it healed!  She wasn't allowed to have a cast/brace/jacket out in, due to her wound not healing (and the worry that she would still manage to rub/scratch herself against the cast, and break the wound down further.  We obviously never expected it would take so long to heal her wound, at the time, and it became a case of " Once her wound has healed, we'll get some sort of support on her."  Never realising that we'd end up at the 4 month point, before she even got it on!  We're seeing the surgeon again in 2 weeks time, so I'm not sure if she'll now end up with a spinal jacket or not.  Or if he'll just be happy with the fact that we've finally gotten to the point where her wound has completely healed over, and that she doesn't need it now, so long after the op.  Hopefully, we'll discover that the initial fusion has taken well (there is a very high chance that Alyssa will need to have this operation done again, if it doesn't work first time round), and we can wait for the rest of the process to take place.

Somewhere in the midst of all this, Alyssa got a 'new' tooth!  A lower incisor.  An adult lower incisor, at the front of her mouth!  And I tried not to panic, despite my immediate déjà vu feelings, from our experiences of her teeth when she was a baby.  And all the biting/chewing damage which occurred.  Sadly, we have had rather a lot of issues with that tooth, and are still fighting the battle to keep her adult tooth, versus having to remove it, with the knowledge that another will not grow in it's place.  And all the follow-up dental treatment which will be required later on, should that happen.  But that's a post for another day!  ;-)

As always, thanks for reading.  It's good to know that we are always raising awareness, and that somewhere out there, another overwhelmed parent - struggling for answers - will come across this blog, and realise he/she is not as alone as it seems.