The First

Emmie had spinal fusion surgery on February 17th.  Remember when I said that NF was a marathon?  February 17th was one of the longest miles.  She went back with her neurosurgeon at 7:30 in the morning and we saw her at 8 that evening.

The logistics went like this:  They went in to the front and took out two vertebrae.  Then they stitched her up, flipped her (with the halo for stability, breathing tube in place, etc).  They put in metal rods in the back of her neck, secured with hooks.  Secured with hooks because they don’t make screws small enough for her bones.  Then they closed her up, flipped her.  Again.  And replaced the two previously removed vertebrae with a straw filled with her bone.  She spent 24 hours on a ventilator and only had a slight dip in her breathing when it was removed.  She was on narcotic pain relievers Wednesday and Thursday but by Friday morning pain was being controlled with acetemetophin only and we were moved to a regular room.  We are also pretty certain that valium makes her throw up.


Going over the details with Dr. Chern.

To say this surgery was extensive is an understatement.  It was intense and a lot of work and a lot of quick thinking and planning on our neurosurgeon’s part.  He and the whole surgical and orthotic staff were amazing.  Emmie’s orthotist came out each time he was with her to give us a personal update.  Dr. Chern came out of surgery and was so great at going over everything they did and how she did.

They straightened her spine, ya’ll.  It went from this:

cropped to this:  IMG_20150802_193024787in a matter of hours.

She did well in the hospital.  Over the weekend, we were worried because she refused to stand.  When we brought it up with Dr. Chern, he wanted to get some x-rays done and have physical therapy come by.  We were just trying to rule out muscle and neurological issues.  By the time physical therapy came by, she showed off and walked to the bed with no problems.  She continued to improve enough throughout the day for us to go home on Tuesday.  Six days in the hospital.  And then home.


Recovery is going to take some time.  In adults, kyphosis surgery is not nearly as involved as hers had to be and it takes about two to three months to recover.  Six months to fully recover.  But, she’s up and walking.  She’s laughing and talking and this weekend she wanted to climb stairs.  Each day she is getting stronger.  We’re continuing with the over-the-counter meds of ibuprofen and acetemetophin and that keeps her mostly happy and going.

To our knowledge no one has really done spinal fusion for kyphosis on a child under 2 years of age.  She’s one of the firsts.  She was a first for our doctor.  Doctors all over the country are watching and learning from our Emmie.  Whether this is a permanent fix or not, we know that God is using Emmie to help children that come after her.  We can’t wait to see how God is gong to write her testimony (or any of our kids for that matter).

What’s next?

Next comes the biggest step.  Emmie will go back sometime in around two weeks.  She’ll be put under general anesthesia and they’ll do a CT scan to make sure the bone is grafting to the rods and straw.  If that is confirmed, they’ll take her in to the special procedures room and remove her halo.  She’ll wear the neck brace she had before the halo for a few more weeks and then she’ll be brace free.  For the first time in over a year.

And then we watch closely and pray.  If she has spinal stability over the next six months, we can consider the surgery a success and no longer have to worry about kyphosis.

At some point after the halo is removed, she’ll also have an MRI to check on the growth of the plexiform neurofibroma.  We were unable to do it in the halo because it would present with artifacts (distortion) and make it impossible to see what is going on. The rods and plate may cause some distortion but it should not be as bad as when the halo was on.

Was.  I can not imagine life without the halo.  It’s just become a part of our lives.  Part of who she is.  And yet, I can not wait to feel my baby’s cheek against mine.

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