And she's done.....

We arrived at the Ronald McDonald House in Greenville last night risking the fact that they may not have a bed for Emma today.

We got a call last night at 5:30 pm stating we could reschedule surgery or "risk" coming in and being turned away this morning because the PICU was full.

We prayed, and called on prayer warriors and came in "expectant" this morning at 6 a.m.  When I checked her in it was as if that call had never been made.  Just breezed right through.

Blessing #1 --  the doctor later told us when he left last night there was no room, and even HE called this morning at 5:45 to make sure there was room in preparation for us arriving at 6.
God went ahead of us.
And there was room.
Thank you Jesus.

As we were getting settled and checked in and waiting, Emma's spirit was so sweet and happy and light.  She was completely calm and without worry.  So we were also calm and without worry.  Even up to the moment she was going into the O.R., she was happy.  (without drugs...lol)  --I'm sure looking at us in this garb probably helped her mood...

One of the things she has loved is knowing how many people have been praying for her.  She seems so surprised that so many people care about her.  So when we wanted to pray before we left her, she asked the nurse to pray...=)
So...she did.
She prayed over Emma and then we left her.








Blessing #2---Emma has been happy and peaceful and without Fear or anxiousness.

The prep and surgery took about 2 1/2 hours.  

Dr. Troup came out and said he found a "surprise".  

We prayed for that right?

She did NOT have a tehered cord at all.  

Basically he isn't even sure what the first surgery was for in China when she was 11 months old.  There was no evidence of them closing the spinal column which would have been necessary if it was a traditional SB Meningocyle.  Typically, a tethered cord comes from the base of the nerve bundle in the spinal cord adhering to something like scar tissue and causing the spinal column to bend and not grow straight; and further damage to areas where those nerves affect the body. So that is what they thought was going on with her. Instead they found severe deformity of her bone structure in her lower back, but the nerves were not tethered. Instead, her spinal cord itself goes all the way down to her hip bones and the nerves that are normally long and loose are abnormally short.  This means they are still causing problems similar to thethering but they can't detach them without causing severe damage.
So it's not "simply" releasing them.  He basically, looked around and then closed her up.  He didn't really change anything.  But, we did get a "picture" of what's in there. Long story short--it's most likely congenital defects that have caused her problem which looks like Spina Bifida but may not have been and for now, there isn't much he can do.  Next steps may look like rods in her back at some point.

Blessing #3--we prayed for the unexpected and that the doctors would see things they never anticipated seeing.  Well...here ya go.

I haven't quite landed on my reaction to this news yet.  I'm more focused on caring for her and getting her through healing first.  There is blessing in the fact that we don't have to worry about further damage from this procedure.  However, down the road this may mean she will need a surgery to place a rod in her spine so that her curve does not continue to get worse because these shortened nerves can continue to contribute to the curving of her spine.

It begs the question:  "did we put her through all of this for no reason?"
I don't think so.
He was able to see more clearly what was going on in there.
We need to process how we will move forward from here.

For now, the healing still remains the same in some ways....
She needs to lay flat for 3 days in PICU.  Her incision is a good 8"+ long so it's no small thing.  He did open up her spinal column.
Our hope is that she can return to school in about 10 days.  Prayers appreciated.

Blessing #4---no ventilator after surgery. And a happy girl without too much dicomfort.

Blessing #5--this man by my side and Emma's side all day today being an amazing Father.

this is the man I married 

an awesome father

who loves his children

I am blessed