Her surgeon extended her jaw by two centimeters. It doesn’t sound like much, but it is a lot to her little face and her little jaw. The previous bone graft was there and intact. It just didn’t grow. At this point I’m not exactly sure what that means for this bone graft. The problem is that she is missing some pretty important bones in the back of her jaw.
Another problem is the tightness of her skin. Extending her jaw by two centimeters takes it’s toll on the skin having to suddenly stretch that much. And then the skin works against the bone graft (another reason to wire her mouth shut with her lower jaw over her top).
There are certainly some reasons to worry about the results. But for now, I’m just going with the flow and holding on to hope that this will work and that we won’t have to do it again. There are never any guarantees with cranio-facial surgery. Each child - even with the same syndrome - is different. Not only that, but then each of us grows differently, heals differently, scars differently, etc. Crazy stuff when you really think about it.
Seeing her this time was less shocking than last time. And oddly enough, she looks better immediately post-op than she did last time. But I know that’s only temporary. They told us that her bruising and bleeding could actually be worse this time around. Frankly, that’s hard to imagine.
Here she is immediately post-op.
Unfortunately, tomorrow she will be much worse.
But at least I feel so much better now that the surgery is over. I honestly didn’t realize how stressful the past few days have been. I was more worried about her safety during the surgery than usual. Worrying takes a lot of energy. And I don’t have energy to waste. I’m so relieved that hurdle is behind us so we can move on to recovery.
The last time she had this surgery she was in the PICU for three nights and then discharged home. Three nights a year and a half ago - and the nurses remember her! Crazy! They all seem very competent and so far, we are very pleased with her care.
That's it for now. I will, of course, update you tomorrow.
Thank you so much,
Christy
8 comments:
Glad this is behind you and you can start concentrating on her recovery. It must be a SN mama thing, because I think she looks great. Hope you are able to get a good night's rest after all of the stress it took to get here.
I love her little nose in the profile shot. Happy things finally worked out and she is now on the mend. HUGS!
You know, I agree with Rene. I think she looks great. From the picture, you can almost see how her bone structure will look if she continues to grow with this new graft. Just beautiful! I'm one of those that finds changes in a child's face a little hard to absorb, even kids I don't know well, but I think she looks very sweet. Hold on to those thoughts when the swelling starts. I know each time the docs came back and told me Alex's swelling was, "Better than they expected," I couldn't believe it could get worse. And yet, every day for three days, it got worse. I would have been apprehensive, too, if it were us going in to face this kind of thing a second time, knowing what I know now.
I'm just so thrilled to see such a sweet little face inside all those bandages. She looks great, Christy.
Sending you hugs today - hope that it can be a less stressful one, and very restful for Harlie. I agree with everyone else, she looks great! Remember to take time out for yourself while you can. Hugs!!!
Hi Christy. Miss you. Wow, she really looks GREAT! Hope recovery is quick and easy. Sending everybody hugs and kisses! Can't wait til everybody is home together again! Brandy
You're doing it. And you're doing it well.
I can't imagine the stress and worry of watching my child go through what Harlie has been through and she is such a strong little girl!! Thanks for the update. We are thinking of you. Mike and Marcy
Anja was talking/asking about Harlie again today on the way home and is truly pulling for her in every sense that a 5 year old can. Please tell her that Anja misses her at school. I think that learning from having Charlotte go through alot right under her nose has made her a very concerned little friend for Harlie too. Sending good vibes your way, the Hayes.
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