Hope and Trepidation

I’ve let this blog lie fallow for a while, far too long, in fact.  This week, I’ve felt compelled to take it up again, anticipating another potentially life changing event for our daughter Eden.  In about two weeks, Eden will be undergoing spinal surgery to correct a rather severe spine curvature resulting from her advanced scoliosis.  At this point, she’s at a 50% curvature, which means she leans noticeably to the left and drags one of her legs.  Her doctors say that it seems to be progressing and that by 18 years old, she might have a 100% curvature, impacting her mobility and overall physiology.  So, my wife and I resolved to have the condition corrected this year.  We’re told that her age is a positive factor for recovery, and that younger children heal easier.  If we wait, the condition would be much harder to correct.

Deciding to have Eden undergo surgery was a tough one.  She’s only been hospitalized once before, when she had a grand mal seizure at 8-years old.  Thank God she was treated successfully then and we’ve not had a recurrence.  Still, maintaining her in the hospital for those few days was an ordeal.  Whenever she regained consciousness, Eden would immediately try to pull out her IVs and throw herself off the bed.  Sandie and I took turns wrestling our little 8 year-old, who obviously didn’t understand what was going on and was probably pretty scared.  She was sedated most of her stay, and released early because the hospital couldn’t maintain her.  Eden was still affected by the medication when she got home and couldn’t even stand up (she unceremoniously and unexpectedly plopped over once in the living room!  At least we had the foresight to have her sitting on an exercise mat).

With the upcoming surgery, we’re going into it with great hope that it will make a significant improvement in Eden’s quality of life. We’re also told that she’ll grow two inches once she’s all “straightened out”, and there’s the promise that her mobility will improve so we won’t need to worry about this again.  Our surgeon has performed this procedure on numerous disabled children with excellent results.  Plus, the staff at her school, the Center for Discovery in Monticello, NY, has a lot of experience caring for post-operative children.  Frankly, they’re in a far better position to care for Eden after surgery than we would be at home. 

Still, with the hope comes more than a little trepidation.  Spinal surgery isn’t trivial, though our surgeon is a leader in his field.  I think we’re most concerned about the post-operative period when Eden is recovering.  If past experience is any guide, she’ll fight all the intrusive IVs and restrictive hospital environment.  We’re hoping she can be given medication that will minimize her agitation and ease her recovery.  Sandie and I are anticipating holding alternating shifts at her bedside for the week while she’s recovering.  I can only hope we can arrange for an aide to help out.

Eden’s school staff is very much on top of the ball and has a plan for when she returns.  We were worried that her penchant for dropping to the floor might injure her post-operative incisions or sutures.  The surgeon tells us that Eden won’t be able to damage the hardware he’ll be bolting to her spine, but our little girl is strong and determined.  Let’s hope her indomitable will doesn’t lead her to injure herself.

And so, we wait… the surgery is scheduled for later in March.  Until then, we’ve been attending pre-operative doctor's visits, for blood work, MRIs, x-rays, and the like.  Eden’s been cooperative with each of these appointments, which bodes well, we think.  We’re trying valiantly not to try to over-anticipate problems and approach the surgery with a positive attitude.  At this point, it’s the only thing we can do.  Watch this space for further updates as our surgical adventure continues…