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Saturday, 16 April 2011

Izzy's spine update

Isabel had an appointment at spinal clinic yesterday...

If you recall, her last appointment was back in March of last year at which point x-rays indicated two major curvatures of her spine (scoliosis).  Thankfully, they were matched at 35 degrees out each which meant she had a "balanced" deformity.  The doctor at that time did not suggest putting Isabel in a brace given that the brace would merely keep her balanced, which was not necessary at this time.

"At this time..."

Oh those blasted words drive me nuts.  Why do we have to wait until something is ACTUALLY a problem rather than work to PREVENT it??

The doctor wanted to monitor her curvature with x-rays every six months.  Depending on how quickly her spine was worsening, he would:
a) prescribe a body brace, and/or
b) suggest a highly invasive surgery of inserting two rods alongside her spine and fusing them in proper alignment to her spine.

Naturally, we did not like the sound of this.  Hopefully with proper monitoring, more diligent position changes throughout the day and some desperate prayers, we could avoid any drastic measures.

Six months came and went and we were scheduled to see the spine doctor again.  And then he cancelled our appointment... rescheduled for the next month... and then he cancelled the day before... rescheduled for the following month... yep, you guessed it, cancelled.  This has gone on since the fall!

Needless to say, we were holding our breath all of last week anticipating that call again.  Meanwhile, I have been watching Isabel's spine worsen and worsen.  Or was it just me?  Surely I was just imagining it?  More positive thinking, imagery of her spine straightening, surely it was okay to ask for another miracle?  Right?  (Even as I type those words, my heart sinks at the selfishness of that request as we have already received more than our fair share of miracles!).

Finally, Isabel saw this doctor yesterday.  We were originally scheduled to get x-rays as we had not done any since the fall but because the doctor had not yet reviewed the fall x-rays, none were taken.  Which angers me... what good is a six month old x-ray??

Regardless... the six month old x-ray was already showing in increase in curvature by an additional 15 degrees!  Now instead of 35 and 35 degrees, these six month old x-rays showed 50 and 45 degrees curvatures!  What would recent x-rays show???  And why aren't we getting any to find out??

To look at her spine now makes me want to cry.  And in some cases, I do.  Her lower spine is so out placed that it is on the SIDE of her lower back!  Where she should have a lower spine, she has an indentation from lack of spine.  Even as I type this, my eyes are welling up.

What pain is she in?  Could I have done something different?  Can we do something now?

The course of action recommended by this doctor is a body brace for now and to prepare ourselves for the reality that Isabel is fast approaching the need for this surgery.  For any of you with a strong stomach, I have a video link to the surgery itself.  It is a high risk surgery...

High risk...

And for what?  Is this a case of high risk potential high gains?  Or is it high risk, high pain but corrected spine?  Or will it relieve her of pain she has now?  Oh what I wouldn't give to have her speak, even if just for a day!  The things I would ask her!!

"Do I scrub your face too hard?  Do you like the music we play for you at night?  Are you sick of little kids' movies?  Do you want me to read to you more?  Do you want your room a different colour?  Which position feels most comfortable for you?  Do you want to sit at the table with us at mealtimes or keep watching your movies?  Do any of your meds make you feel sick?  How much pain are you in?  Do you want to do this surgery?  And my dear precious child.... are you happy?  Do you know how much I love you?  "

Dear God almighty... if only for five minutes!  What I wouldn't give to HEAR her heart's desires!

I recall fighting her fundoplacation surgery (tying the base of her oesophagus to stop her constant vomiting) when she was five years old.  Some people I had talked to said it was horrible, painful, invasive.... these words scared me!  Was it necessary?  Would she survive?  But at only twenty pounds of skin and bones, we had no choice left.  And it turned out to be her LIFE SAVER!  She doubled her weight in one year!  And being bigger made her stronger to fight infections!  We went from visiting Emergency several times a month to almost never!  Why on earth did we fight this??

I struggle with that impending decision now, too.  Just a tiny bit of research can lead to various feedback... One young woman shares her story of undergoing the surgery on youtube.  Then there's another woman's story of how the surgery ruined her life!  ARGH!!  What is best for Isabel?

I am jumping the gun here... but I want to be ready to face that decision and I pray from the bottom of my heart that James and I will be on the same page about it, too.  Nothing seems worse than when we do not agree on treatments.  At least we are always open to discussion and surely we will face even this challenge with the love we share for our daughter.

Because Isabel's curvatures are less than 70 degrees, she is considered a moderate case.  Should she progress beyond 70 degrees, the severe twisting of the spine could cause the ribs to press against the lungs, restrict breathing and reduce oxygen levels.  The distortions could also cause dangerous changes in the heart.  Any curvature reaching 100 degrees is considered "severe" and both the lungs and the heart can be injured.  Not only that, but these patients are susceptible to lung infections and pneumonia.

So please... from the bottom of my heart... join me in a visualization process of healing for Isabel!  Look at her picture, of her spine, and join me in just imagining it healing.  Surely such powerful intentions could reach her as much as we have "felt" prayers?  What have we got to lose?  And pray that I "hear" her in whatever way she can communicate to us what she needs.

If nothing else, then prayers that her life be wrapped by the grace of God... that she continue to make those around her fall in love with her... that she be comforted by God's will for her purposeful life.... that she be as pain-free as possible, and that we cherish every moment she is with us.  Oh how I love our Isabel Faith.  Thank you for joining me in that.  God bless you all... from the bottom of my heart.

1 comment:

Anonymous said...

May God continue to hold her gently in the palm of His hand.
He will give you the answers you need, when the time comes.
I have heard that when we have the hardest times to cope, that He chooses to carry us the most during that time.
Peace be to you and your family!
God bless!
Love your cousin,