Oct 27, 2011

Zoe's Bone Graft

Yellow spiderman scrubs. Check.
Hair pulled back in pony tails.  Check.
Overnight bag packed.  Check.
Art projects and movies for Zoe.  Check.
Snacks and drinks for Mama while Zoe is in surgery.  Check.
Excited little girl.  Check

That's our morning so far.  For a few weeks now, we have been talking about the bone graft surgery.  Zoe understands what it involves, what it will feel like and what it means to her.

And why is she excited?  She will finally get teeth!! (More about that in a sec).

So as I wait for Zoe to get out of surgery, I will take this moment to tell all of you what is involved in a bone graft in "regular" words. 

You know how you have top teeth that go into gums and right behind is the roof of the mouth.  Well, if you have a complete cleft lip and palate, you will have a hole or "cleft" where there should be lip, teeth, gums and a roof of the mouth.  At about 1 year old, Zoe's lip was sewed up.  Then at 18 months her palate was closed (with skin mostly). 

But she has no teeth in the area of the cleft.  (Hers is considered quite large and goes almost down the middle, just slightly shifted to the right side and through the right nostril.)  She is missing quite a bit of bone in the roof of her mouth.  Right now, her roof of the mouth is almost entirely skin and that skin gets holes in it called a "fistula".  If there was no surgery done, she would likely never have teeth in the front (she's missing 6 on top). 

Bone continues to grow up until late teens.  Her bottom jaw will continue to grow.  But without a bone on top, that will not grow and she will have an increasingly larger underbite.  Her top teeth already don't match up with her bottom teeth (not sure how she chews, but she does) and this would just get worse. 

Without that bone, she will never have teeth up there either.  Nothing to anchor to.  Oh, and the roof of the mouth is also the base of the nose.  So without that, the nose will continue to look like it is "collapsed". 

So they need to get a bone.  Where do they get that?  From the hip.  And then they sew it into the roof of the mouth. 

The mouth will be sore for a while (as you can imagine).  They will have her on a liquid only diet for a week.  Then another 3 weeks or so of "soft diet".  (Things you don't have to chew ... mashed potatoes, overcooked pasta, etc.)  Last time she was on this type of diet it was for the pharyngeal flap and she was on it for 3 weeks.  And she lost 3 pounds (she was 48 pounds).  She still hasn't gained it back (she's 46 pounds as of today).  Everyone is always telling her how lucky she is to get to eat ice cream and pudding.  Poor baby, she is not a fan of those.  She likes salad and chips.  Like Mama like daughter.  In June we got really creative and will do it again. 

They all say the worst part of the pain is the hip.  Surgeon said the pain will be pretty intense for about 3 days, then really sore for a good week.  Then eventually, the pain will go away and she'll feel like playing but can't.  Nothing rough for at least a month.  (THAT will be hard for her!)  No ball, bike riding, swimming, wrestling, etc.  So she'll be up and around for Thanksgiving. 

They require her to stay home from school for 2 weeks and then it's optional after that. I will send her only when I feel she can stay safe (Like no balls to the face or hip, will eat the right foods, etc).  If not, it's only 3 weeks until Thanksgiving break.  The teacher already sent home work, books, activities. 

The surgery is about 2 1/2 hours.  The surgeon says they usually call after the hip bone is harvested but before they put it in her mouth, just to keep us in the loop of how things are going. 

One cool thing I haven't mentioned is that we are not doing this alone.  A while back, Tara (a friend and fellow adoptive mother) said that her son Clayton is having his bone graft surgery too and wishes we could do this together.  So we thought, Why not?  Asked the Surgeon. She said yes.  Clayton was adopted from China too, is 6 just like Zoe.  He has a bilateral cleft and is in Zoe's book!  So how cool that both of them are doing this together. 

As I was typing all this, Tara and Clayton stopped by the waiting room on their way to surgery prep.  I always buy Zoe a little something for her hospital stays like art supplies.  This time I got her some cool stencils and such.  And we bought the same little kit for Clayton.  Well, apparently, Tara and I think alike and she bought Clayton some origami kits and she brought some for Zoe.  (How sweet!) 

10:05am, got a call from the surgery nurse, "The bone has been harvested".  That news means that the first half of the surgery is done.  She was doing well.  Anesthesia is always a higher risk for her due to her retroverted airway ... and this is the longest she's ever been "under".  But so far so good. 

As I hung up the phone, it hit me just how "not normal" of a sentence that was.  I go through the motions of life, trying to be "present" in every moment.  Trying to suck the marrow of life and learn all I can.  I don't really stop and reflect on how my life looks to others.  But then ... there's a sentence like that ... and it hits me.  My life is not normal. In so many ways. 

11:10  Zoe is out of surgery ... took just over 2 1/2 hours. They were able to get the whole graft from one hip. Lot more bleeding from the mouth than I thought it would be.  Morphine is my friend. Within 30 minutes of surgery, she was already taking sips.  (Did I mention how tough she is?)

For those curious folks, here are other details: she is on an antibiotic for 7 days, a special rinse (2 times a day), has to do saline rinses when she eats/drinks. Soft diet for at least 4 weeks and we'll go from there. (It will depend on her healing.)

Her graft was considered straight forward ... her cleft is very wide but it is unilatereal and I understand that complicates the graft a bit because it has to be pieced. Hers is unilateral so it can all go in as one piece.

She has disolvable stitches. We have a follow up in 1 week, 2 weeks, then we'll go from there.  The hip has tegaderm which is waterproof ... so she can shower but not soak (bathe).

More details to follow as they come.

3pm, the child life team came by to see if she wanted to go to the playroom.  I was SURE she would say no (afterall, she is still spitting blood).  But trooper said YES.  And she walked down the hallway!  No offense meant to those who do not have this kind of child, but ... Man, my kid is tough! The nurses were in shock.  She was going slowly and carefully.  She wasn't rushing or racing.  She was careful and deliberate.  But she did it.  She did a quick art project and then was ready to head back to the room. 

The rest of the afternoon she took turns alternating between being fine and throwing up.  Zofran helped finally.  She has round the clock pain meds going and more morphine as needed.  (So far ... NONE.) 

She's walked down the hall way a few more times.  The nurses have been in shock at her.  Oh, and tonight, the nurse asked for Zoe to open her mouth so she could see inside.  And she opened it WIDE open, just like she hadn't just had mouth surgery! 

We are thankful for the prayers.  We know God hears them! 


  1. Thank you for this detailed post Beth. Those of us with younger ones appreciate and look to folks like you for guidance at each step. So glad to hear she is already bouncing back and wanting to play! Please keep us posted on her progess. We'll be praying for a speedy and relatively pain-free recovery.

  2. Hooray! Hope it all continues to go well!

    Monique in TX