A Long and Scary Road Ahead

Watching Annie, you'd never know that she's starting down a road on which she will be fighting for her life over the next year or more.  She is happy and pleasant and full of smiles today which warms my heart.  However, our worst fears were confirmed this morning and we are now facing the most serious post-op complication that could have resulted from her spinal fusion two months ago.

Annie's orthopedic surgeon aspirated a sampling of fluid from Annie's back this morning and as soon as we both saw it draw up in the syringe, we knew it was bad news.  The "fluid" was not really fluid at all, but pus that looked like applesauce.

There is one large pocket (8 inches long) of this fluid and at least a couple other smaller pockets as well, all lying about an inch under her skin.  In order to clean out all this infection, Annie will be having surgery tomorrow afternoon. The orthopedic surgeon will open up the full length of her back again to get down to the rods and spine.  He'll try to clean out all the infection the best he can, will remove any pieces of cadaver bone graft that didn't fuse, and place antibiotics directly into her back.  If her back is really contaminated badly, he will need to repeat that surgical process again on Friday.  Surgery should take about 3 hours.

In the meantime, the pus collected this morning is being sent to be cultured so they can see what grows to determine the best antibiotic to treat her with.  The problem, however, is that since she has been on so many antibiotics this past week, the cultures might not grow well, leaving them to just guess at the best antibiotic for her.

Annie will require a central line for long-term IV access.  That central line will stay in for a year or possibly longer so she can receive IV antibiotics continually over that time.  Because all those antibiotics for so long can cause c-diff, they are also starting her on oral vancomycin which she will also remain on for a year, to help prevent c-diff.

If infection recurs after a year of antibiotics, then they will do surgery again to remove all the hardware, because its the infection on the hardware that is so difficult to treat.  After a year, her spine will have completely fused, so the hardware really is no longer necessary.  However, the ID team seems optimistic and said they very rarely have to remove the hardware.  But now I'm not sure really how optimistic they are or if they are just trying to calm our worst fears and instill hope.

On another note, her calprotectin (which measures the amount of inflammation in the colon) came back today.  It measured 448, and normal is below 50.  So we aren't sure if there are still GI issues going on as well, or if these are all side effects of the antibiotics she is on.  Supposedly GI will be in later to talk to us about those results.


We are feeling a little overwhelmed right now. It is so difficult to think of all that Annie has endured recently and now to know the rough road that she still has before her.  She is my hero.  I don't know anyone stronger or more patient in trials than her.  There is so much sorrow and heartache as we consider that we might lose our sweet Annie, but we are putting our faith in Heavenly Father's plan for her.  We were told our baby girl wouldn't survive birth, but she has been sustained by the Lord for nearly 12 years now.  We trust that she continues to be in His care and we know we just need to have faith in His plan for her and be accepting of His will.

Annie is in good spirits and finally resting today after being awake all night for the last couple nights.  She isn't tolerating her feedings very well, but we suspect that's because she is cycling back and forth from the need to be NPO for procedures, and starting up her feeds after that doesn't always go so smoothly.  Annie has also had a few grand mal seizures the last couple days, which could also be the trigger for her vomiting.  But she is finally asleep now.

Her fevers continue to elevate when her motrin and tylenol wear off.  Since she is having this big surgery tomorrow, her motrin has to be discontinued due to bleeding risks with surgery, so we're hoping that tylenol will cover her fevers well enough to keep more seizures away and that they effects of the motrin don't linger tomorrow and cause bleeding issues.

Annie has an incredibly long and difficult road ahead of her, so we definitely appreciate all of your prayers for Annie and for the rest of our family as well.  We truly appreciate all the expressions of love and concern from our dear friends and family.