My Family

My Family

Tuesday, November 19, 2013

When there are no answers

Some days it is just crazy.  When you have a child that is really complex sometimes you just have to strap on your hat and get ready for a wild ride.

It has been one of those weeks.  What should have been a routine MRI just snowballed.  But it started snowballing much earlier than that I am guessing.

Cary Lynn had been sick with one thing after another.  Stomach bugs, whooping cough (yes I do vaccinate her, but surprise!  you can still get it!  Grrr, that is a whole other post), and a partridge in a pear tree.  So in between all this her body was starting to break down and get weaker.  And while that was happening a silent killer was creeping in.

So we went for the MRI and a day later we were in the hospital with sever coughing and vomiting.  It seems that we picked up a really bad virus that was sent over the top with the MRI and low oxygen she was on during the MRI and our good old friend Diabetes Insipidus is back.

For those of you who read this you will know that endocrine has changed their minds about whether she has had this or not about 5 million times.  The fact is she DOES have it.  Even when they told me they were so sure she does not, surprise she does.  Insert eye roll here.  DI does not affect blood sugar.  It affects sodium levels in your body.  Cary is supposed to be in the 140s.  When we came to the hospital she was 164 and rising.  This can throw your body out and cause enough issues to basically shut you down.  Her little kidneys were just on overdrive.

So we are hooked up to IVs and oxygen to support a fragile and complex system.  It all starts with the brain.
Or rather a complex micro-preemie brain.  On the left you can see what a normal brain looks like for a little one.  On the right you can see what my daughter's brain looks like to an extent.  The ventricles are enlarged and fluid seeps in.  It destroys the good parts and replaces it with fluid.  Cary's brain continues to baffle experts and causes people to wonder.  Her cerebellum is smaller than average, even though her shunt is working her vents are still large, and there are waves and jumps that we don't get.                                                                

She should follow patterns, but she doesn't.  I get told that her lungs are off, her kidneys are too small, and her brain is so abnormal.  Then I ask why and how.  I get silence.  Deafening silence.  Coughs, eyes shifted away.  I scream for answers that no one has.  

The simple fact of the matter and the whole heart of it is that technology and medicine have advanced.  Cary Lynn wouldn't have survived 100, 50, 20 and maybe even up to 10 years ago.  We advance and as we do children live.  That is great for Cary and us, but children like Cary are still complex.  Still fragile.  But she lives.  She thrives.  Despite being in the hospital for the umpteenth time she is happily blowing raspberries and digging in her diaper with a happy grin.  

So we will never know.  I won't have answers, at least not in this life, but I do have one feisty daughter.  She is fragile and I may not have as long of a time with her as I would like, but I will treasure each moment.  We aren't promised tomorrow.  Or today.  We have to live in the moments that we are in.  My children are gifts to me.  On loan.  In the end they don't belong to me but to a force and power much greater than I.  I will love hard on them while I have them and treasure the moments.  Every last one of them.  

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