Tuesday, April 1, 2014

Detethering Recovery Updates

It's been two weeks and one day since Mason had his spinal cord detethering.  Healing is going well. 

Here is a close up of his back this morning.  It is healthy and healing, with most of the glue gone except a patch right there in the middle.  We can touch his incision now and while he doesn't like it, it doesn't hurt.  Once all the stitches fall out we will move to doing some scar tissue massage but for now we're leaving it alone.

In general we are just waiting and watching Mason to learn what changes surgery brought.  One of the difficulties is that he's just 2 years old and really can't explain what feels different.  We can make our observations and guesses and we could be right or totally misinterpreting what we see.  With that disclaimer, here are things we think we're seeing:

  1. Sense of touch in new areas - this is a big one we are making guesses on.  From what we can tell in playing with Mason and trying to touch him when he's not paying attention to our hands, it looks like Mason has gained some ground here.  On his left leg he can now feel the top of his thigh down almost to the knee.  The sense of touch fades out along some places on the sides and underneath.  This is new.  He's ticklish. We think he has also gained some feeling in the right leg/thigh, though not as much.  The jury is still out on what he can feel on the lower back, butt, and abdomen.  He's pretty protective of his back still, telling us not to touch it.  We'll explore this more as time goes on.
  2. Strength gained in his hips - He is able to pull up at the hips still and can do so with more strength, pulling those legs higher up to either side (in a frog position).  He can NOT straighten at the hip.  We were not expecting that anyway.
  3. More flexibility in the hips and feet - we can tell a difference because we can now stretch things out more than before.  A little.  Will he still need surgery on his hip and feet?  Probably on one side.  We'll be talking with orthopedics later this month at Myelo clinic.
  4. Some new feeling in his belly, on the inside - This one we didn't expect.  Every night during Mason's enema he's telling us 'ow' because his belly hurts.  It's the cramping that happens after he's had the enema solution in for a few minutes.  In all the time we've been doing daily enemas up to now he's not ever felt uncomfortable.  It's a great thing because we're using that as our cue to move to the potty and let things go.  We don't know what this means beyond it is something Mason never felt before surgery.  Does it mean things are working a bit better (more coordinated) in his bowels?  Maybe.  Does it just mean that now he's going to be uncomfortable every single night during his enema?  Maybe.  Like many things with Mason we will just have to wait and see!
I can't begin to tell you how good it is for my momma heart that Mason is healing well and feels good again.  He is feeling so good that swinging is back on his daily plans outside.  We are being cautious and have a folded towel on the back of the swing as a bit of padding between his back and the rubber of the swing.

Next up in Mason's medical agenda is Myelo clinic in late April.  It will be a full team appointment where we check up with all of his specialists and I expect to come out of that with more appointments with a few of the specialists. 

That's it for now, I'm off to enjoy the warm weather with my kids in the back yard.

9 comments:

  1. How exciting! I didn't realize that tethering/detethering could make such a difference... to be fair there is a LOT I don't know :)

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  2. You've been carrying such a stressful load; what a treat to read happy news and see your boy playing in a swing.

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  3. Yeah, Mason!! What great photos of your ever happy boy! Warm weather? Send some this way! We are tired of winter!

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  4. Yay! What happy results and rapid healing. I'm glad the weather is allowing him to swing.

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  5. What?! You mention that he can tell you all to stop touching him? I didn't know he could talk? Post of video.

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    1. I'll try to get some video this weekend! He has had a language explosion in the last month or two and it's wonderful to hear.

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  6. Yeah for good news! Mason seems to be doing well in so many areas, this is wonderful news and I'm sure a bit of a relief for the Mama.

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  7. Overall this sounds like exciting news. The tummy discomfort is a little drawback but when this ultimately means fewer enemas or Mason becoing mor eindependen tin the potty thing that's good.

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Thanks for commenting!