Thursday, 23 May 2013

been there, done that, got the xrays

I wanted to gather some of the bits and pieces to do with Smiler's hips together in case it could be of help to someone else.  I remember searching the internet when Smiler was diagnosed and completely failing to find anything on a child over about four, and  that can leave you feeling very much out on your own.  I've also covered the out of the blue diagnosis, looking into our options, and what life was like with Smiler in cast, and I'll write about the blips before the op another day.  This is some of the technical stuff to do with the op, as well as some of the equipment we used while he was in cast.  

Smiler had broomsticks ~ upper thigh to past ankle in plaster on both legs, braced with what literally was a piece of wood ~ hence 'broomstick' ~ from one knee to the other, so his lower body was like a capital A.  He was (and still is) dependant on nappies, but being in broomsticks rather than a full spica meant there was a lot less worry about leaking.  His wounds were on the outside of both thighs, approximately 25cm (12 inches) long, which meant part of each was under the cast.  He had a couple of smaller wounds on his lower abdomen, where some of the surgery had to be done from that side. 

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All the bony details
Smiler had both hips done in the same op.  His left side was the more straightforward of the two.  The femur (thigh bone) was broken, and a wedge taken out of it, to change the angle of the bone into the pelvis.  On the right side the same thing was done, but as on this side the socket was so shallow that there was literally nothing to keep the femur in the right place, a piece of bone was taken from the back of his pelvis and grafted on at the side to form a lip, so that (hopefully!) the femur wouldn't just slide straight back up to where it had been.  This is called a shelf procedure, and the femur was broken in the same way as the other side ~ this is called a femoral osteotomy, so on Smiler's notes he had bi~lateral (both sides) femoral osteotomies, and a shelf procedure on the right.  To hold the  bones in the right places so they could heal, paediatric locking plates were used ~ I don't know what (if any) difference there is between these and the usual plates and pins, but it was the first time the surgeon had used them so I assume they were new or different or something!  They plastered both legs along with the middle of the A frame while he was under the anesthetic, but this has to dry for at least 24 hours before the next step ~ wrapping a layer of fancy fibreglass over the top which makes it stronger and is also able to cope with a little bit of rain.  I don't have the xrays from back then, but here's the one I do have that was taken just over a year later:

And here's the annotated version:

You can see that the bone graft on the right side (which is the left side as you look at it here) is pretty secure, and the gaps in the femurs have filled in on both sides too, while the plates held everything in place.  

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I was worried about what clothes Smiler was going to be able to wear (as you do!) but in the end bought some cheap jogging bottoms from the supermarket, and cut from the inside of one ankle right up to the crotch, and down to the other ankle, and sewed some poppers at strategic points to hold it all together.  The funny thing was that they had to go on over his head because his feet were so far away from one another!  Because he was in nappies and his time in cast was during good weather, most of the time Smiler didn't actually have trousers on.  I know that sounds a bit strange, but with the whole of both legs covered in plaster, he was more likely to over~ beast than get cold.  Smiler's circulation isn't very good, so we put fluffy socks on his feet and since the cast was covered in black fibre cast (Smiler's choice by the way), he kind of looked dressed anyway!

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The fancy wheelchair that you can see in the photos is a Chunc ~ it was amazing ~ you could quite literally push it with a finger it was so light and smooth ~ miles better than Smiler's usual wheelchair!  The top brought it to the hospital and adjusted it all so it was providing the support exactly where it was needed.  The rental cost was covered by the Newlife Foundation, who were able to make a decision on the spot.  It seems wrong to me, as I believe the cost should have been covered by the NHS ~ we were told that they had wheelchairs big enough for a 'typical' child in a spica or broomsticks, but because Smiler was much older, they didn't have anything suitable.  Course, the only reason he was older was because Smiler's paediatricians and geneticists and physios and occupational therapists, all of whom were employed by the NHS, completely missed the fact his hips were dislocated.  The NHS had a simple solution to the wheelchair problem ~ 'he'll just have to stay in bed til the casts come off'.  Thank goodness Newlife came through instead.

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Giant beanbag
The other piece of equipment that got a lot of use was the giant beanbag ~ because Smiler was cast so wide he couldn't sit on any of our furniture, so the options were bed or chunc.  The beanbag changed that ~ he could sit comfortably and watch TV, or supervise tea being cooked in the kitchen, or chill in the garden.  It has a removable waterproof washable cover, so if his nappy leaked, or he dropped a drink on it, or it got a bit muddy, we could unzip it, throw it in the washing machine, hang it to dry then zip it back on.  I'm slightly embarrassed to admit that Smiler's surgery was in April 2008, and that huge beanbag is still in our living room.  I know we don't need it, but it's bloody comfy and it never hurts to have something you can instruct your children to sit on when you have guests and a limited number of seats!

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It's odd looking back on this time ~ we had been dreading it so much that it was actually not as bad as I thought it was going to be.  Smile withdrawing was my biggest fear, and although the time he and I spent in the hospital in Southampton were easily my worst twelve days in a row in the last ten years, once he was home he seemed to just get on with it.

Hopefully some of this might be of use to someone out there, and please do get in touch if you have any questions about the whole thing, and make sure you check out Steps ~ tell them I sent you!  Tell you what, if you're local, I'll even let you borrow my giant beanbag. 

1 comment:

  1. I just wanted to add that the pediatric pin set up used is the same one used on kids and very small adults in the US for the same sort of issues and hip fractures. I shattered my right femoral neck when I was 17 and nearly fully grown but short (5'2") and they used an extremely similar looking set up t put my back together, complete with a 12" incision down the outside of the thigh. (I didn't need a shelving, though, and no dislocations, so I got away with only 1 incision that surgery.) You can see my X-rays on one of my blog posts (i can not post the direct link to that blog post, but if you follow my name to my blog, the post was on 10/19/2013 and titled "My Story- Monostotic Fibrous Dysplasia). It's the first of the X-rays on that post and it actually shows the set up after 1 of the big 2 top pins had already been yanked after it came loose 1 year after the implantation. The loosening was due to the fracture compressing as it healed.

    The broomstick set up you guys had to contend with was due to the shelfing portion of the surgery. I know the standard procedure here in the US is to do a full hip spica cast with this, so I'm glad they were able to give your Smiler the ability to still bend some at the waist as he healed.


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