Final Spinal Surgery Testing and Info

Today I took Annie to the hospital for a series of tests and consultations in preparation for her spinal fusion on November 11th.  First we had a series of x-rays taken of her back, and met with the orthopedic surgeon for more than 30 minutes.

The good news is that her curve hasn't worsened since August--the largest curve (of her 3 curves) is still around 85-90 degrees.  But her spine isn't quite as flexible as he had once thought in the past.  The flexibility x-ray where they bend her against her biggest curve showed that they were able to bend her to 50 degrees.  Generally a 50% improvement is expected after surgery, so the surgeon does think he can get her down to about a 40 degree curve with the fusion.

However, since her spine is not only curved, but also twisted, she has developed a very large rib hump on her right side, and since it is so difficult to un-twist her spine with this surgery, he anticipates that she will still have a rib hump, but hopefully it will not be quite as prominent.

The orthopedist will need to study her x-rays more thoroughly to decide exactly which vertebrae will be fused together, but her fusion will definitely start at T2 (just below the neck) and go to L3 or L4 (below the waist) or maybe down to her pelvis.  Her worst curves are fairly high on her back, so he might be able to avoid fusing her pelvis.

The doctor went into great detail of how the surgery is performed which was helpful.  After making the incision from her next to hips, he first inserts the screws into the vertebrae down the length of her spine.  They have screw knobs on the end of them that they then begin attaching one metal rod to, working down the length of her spine, on the concave side of her curve.

As they attach the rod to the implanted screws, they tighten them so as to pull her curved spine towards the straight rod.  The surgeon watches to see how far he can pull the spine before the screws in her vertebrae start to slip, and then he knows that that is only as far as he is able to correct her curve.  At that point, they will shape the rod to fit the remaining curve of her spine.

After the first rod is placed securing her spine, they place the second rod on the opposite side of her spine to further secure it.  As they attach the rods to the spine, they will also try to un-twist her spine and rotate it back to a normal position as much as possible, but that part of it is very difficult to correct.

They expect the surgery to last 8-9 hours, which I know will be the longest and scariest 8-9 hours of my life.  We have been told of all the serious risks involved with this procedure, but today we were told of even more risks.  The biggest risk during the surgery is a fatal loss of blood.  They plan to have two units of blood available in the OR for her, but sometimes if there is an accidental nick of an artery or they can't find a source of blood loss, it can be life-threatening.

Also, since Annie will be laying prone for 8-9 hours, there is also a risk of blindness.  It is rare, but it occurred at our children's hospital a few years ago during this same surgery.  There is a risk of cardiac arrest during surgery, as well as risks of paralysis when working with the spine.  Yes, Annie doesn't walk, but paralysis would still affect her rather dramatically in other ways.  They will be inserting needles under her skin all over her body and have leads on her head and one person will constantly be monitoring her neurological activity during the surgery.

After surgery she will be in the ICU for a day or two.  She might remain intubated and on the ventilator in the ICU also. The biggest risk after surgery is pneumonia, so they will work extra hard with us to get Annie sitting and up-right as soon as possible after surgery to help avoid a potentially fatal case of pneumonia.  There is also a risk of infection, which is often very difficult to treat in spinal fusion patients and can be fatal.  Annie will be having cadaver bone grafts placed in her spine as part of the procedure, and the doctor will be inserting antibiotics in with each bone graft, and she will also be receiving IV antibiotics as well.

After surgery she'll have a drain coming out of her back for a couple days, and will probably receive at least one more blood transfusion.  She is expected to be in the hospital for a week if all goes according as planned.  Once she's home, she will be recovering and out of school for about 4-6 weeks.

After x-rays and meeting with the orthopedist, we went down to the pre-op unit and Annie had blood drawn for lab work and to type her blood in prep for her blood transfusions.  They also took a urine sample, making sure to check for any sign of UTI.

Then I met at length with the anesthesiologist.  She again stressed all the major risks that the orthopedist talked to us about, stressing the risk of fatal blood loss during surgery and cardiac arrest.  She also talked about the added risks of being under anesthesia for such a long time.

We often feel overwhelmed and incredibly nervous and scared about this procedure.  It's such a major surgery, but when we expressed our anxiety to the orthopedist, he reminded us that he does one of these spinal fusions every single week, and that it really is a rather safe procedure!  I know they have to legally tell us all the risks up front, but it sure does scare us.  The orthopedist reminded us that they know exactly what all the risks are and what complications can arise, so they are always prepared for those.  He gave us a little more sense of peace, and we find a lot of peace knowing that so many of our friends have gone through this successfully.  We are trying to keep a lot of faith in Heavenly Father knowing that Annie will truly be in His hands, and have complete trust that He will watch over her.

So for now, with surgery about 2 weeks away, we are working diligently to keep Annie healthy.  As the doctor said, all the stars must be aligned before going into this surgery.  It is a huge procedure and can be life-threatening, so if even one little thing isn't quite right, they will cancel surgery.  She can't have any kind of cold or illness, infection (UTI), or not even diaper rash or an ingrown toenail!  
Needless to say, this is a major surgery--definitely the biggest surgery of her entire life.  We really appreciate prayers and fasting on Annie's behalf, and also in behalf of the surgeons and surgical team that will be working on her.  And prayers for our own peace during such a scary time are greatly appreciated as well!