Preparing for Scoliosis Surgery

Annie had her regular 6 month check-up for her scoliosis today, and we finally heard the news that we've been dreading for the past several years...

Annie's scoliosis has now worsened to the point that she needs surgery.

She was first diagnosed with scoliosis when she was 18 months old.  We've watched it gradually worsen over time and have experienced periods where her curve has held steady.

For the past 2 years or so, Annie's curve has been holding steady around 55 degrees.

And for 2 years we've been anticipating the news that we received today.

Annie's curve now measures 68 degrees.  Not terrible.  It could definitely be worse, ...and it will eventually get worse.  But it is now severe enough that we need to start preparing Annie for a major spinal fusion surgery.

68 degree curve--January 2013

37 degree curve--January 2010                                                     55 degree curve--January 2011

Right now the curve of her spine is not yet putting added stress on her heart or lungs, and it probably won't until it gets to be more like 90 degrees, so part of us thinks we should just deal with the scoliosis until we absolutely have to put Annie through such a traumatic surgery, but as our orthopedist has explained, it is much more difficult to fix a 90 degree curve than a 70 degree curve.  Surgery would be better tolerated and easier for the surgeon to intervene earlier rather than later.

The orthopedist also explained that the spinal fusion surgery can typically only decrease the curve by half, so getting a 35 degree result is much better than a 45 degree result.

To briefly explain what this surgery would entail... An incision would be made running the full length of Annie's back.  Two metal rods would be attached to each side of her spine with several screws holding the rods into her spine.  Her spine would be fused so there would be no flexibility in it at all. It would greatly improve Annie's comfort and ability to sit well in her wheelchair.  It would also allow her to lay flat on her bed such that all of her back would be able to come in contact with the bed again.  It will most likely also improve her arm and hand movements as well as her head control, and help to keep her lungs and heart healthier.  Fixing her scoliosis will also make her even taller!

It is a very risky surgery--twice as risky for Annie as for a typical child.  There is a huge amount of blood loss and transfusions are almost always required.  There is a risk of spinal cord and nerve damage, paralysis, numbness, including loss of bladder and bowel function.  There is also a risk of developing pneumonia and infection, and the doctor got very real with us about the risk of death, which again is increased in a medically fragile child like Annie. He even explained that just recently two of his patients experienced complications that left them fighting for their lives.

I can't help but think back on the countless surgeries Annie has already had and remember how surprisingly well she recovered from all of them.  Annie has never had pneumonia or any complications from surgeries or anesthesia.  A part of me feels calm and at peace with the thought of putting her through such a difficult and risky surgery.  But another part of me is overwhelmed and terribly frightened about putting her through this and possibly losing her.

The orthopedist told us that we don't need to rush into this big of a surgery.  He wants to see her again in 4 months to determine the speed at which the curve is now progressing.  It's believed that her curve is starting to worsen now because she it hitting her growth spurt and her curve is anticipated to worsen over the next short while, just as it has in the past 6 months.

For now, the doctor has told us to get our ducks in a row, and get prepared for surgery, so we can have Annie at her healthiest.  So over the next 4 months we are going to be working to get her to gain even more weight--maybe 10 more pounds. We also need a consultation with her GI doctor and an Upper GI study to test her fundoplication--the surgery she had when she was 2 to prevent reflux.  If her fundoplication has loosened enough over time that she can easily reflux past it, Annie might require surgery to have her fundoplication fixed before undergoing her spinal fusion to help prevent the risk of developing pneumonia after surgery.

It's days like this that I just have to take some time to grieve all over again.  Every new challenge that arises is a loss similar to the loss we felt when we first heard that our unborn baby would never live a normal life and be taken from us early.  Only other parents who have faced these same challenges can understand the overwhelming heartbreak, nervousness, and anxiety as we consider putting our daughter through such a major surgery that possibly could take her life. 

Our hearts are heavy today as we contemplate the reality of this surgery coming up. Please keep our family in your prayers as we prepare Annie for the biggest surgery of her life.

We are so grateful for prayer and the peace it gives us in difficult times.  We are so grateful for the power of revelation and to know that Heavenly Father will help guide our choices on Annie's behalf. She is, and always has been in His care and we just need the faith required to put her in His hands again as she faces this surgery.  But it's not always easy to trust in His plan. I'm learning SO much from Annie in this regard.  She has taught me to rely on the Lord in ways that I never would have learned without her in my life.

Now for today, I need to set these worries aside, and mentally prepare for tomorrow when we see our other orthopedist to discuss Annie's dislocating kneecaps and the surgery required to give her relief from that pain.  It's times like these that I feel so overwhelmed by all of Annie's current health problems.  My concerns for her are so great.  I'm humbled again today to consider that Heavenly Father has trusted us enough to care for her.  Today I am emotionally overwhelmed.  I try to allow myself time to grieve and worry, but then it comes time to count my blessings, be joyful for all that I have in my life, and look positively towards a new day, trusting that the Lord will continue to guide our footsteps and keep Annie in His watchful care.