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Sunday, March 10, 2019

Ellie's Healing Powers

It's been roughly over a 2 months since we were in the ER on New Year's Eve wondering what the future would bring...wondering if she would still be here...still be whole...still be her sparkling, musical, snarky, happy, sweetie, intelligent self.  (scroll down for this back story)

When the ventricles held their own they tested her for other things and found she was anemic.  The symptoms of anemia are very similar to symptoms of pressure on the brain: fatigue, out of sorts, pain, etc.

We treated the anemia and she is back to baseline and along the way they took several more scans...and still no change in her ventricles.

The doctor's proffered up some scary options...over my dead body types of you may not drill into her skull to insert a pressure gage to sit on her brain "just to be sure there is no pressure"...look to the child for crying out loud and the child was only minimally symptomatic.

There was that whispered hope though that maybe, possibly, her body had figured it out...we'd have to wait and see which felt like playing Russian Roulette with her life. As every parent of a child with any chronic medical issues knows, it's alway navigating toward the lesser evil when it comes to medical interventions. Wait and hope she doesn't get more brain damage or do someting that could give her more brain damage... shitty choices indeed.

We waited and scanned.

Our last visit to the neurosurgeon - who has taken a team approach and discussed Ellie with her pediatrician - I like her because of that - said that she had studied all Ellie's scans and that she suspects Ellie's shunt hasn't been working for a long time. The only clear scan of it is really years ago.

That and the fact that there has been no change.

The plan is this: scan her again in three months. If that is ok, then scan again in 6 months. And if that is clear go to yearly. She suspects Ellie is shunt independent.

This means that our child who left the NICU deaf now has perfect hearing.
Our child whose vision was so very minimal is now at 20/200.
Our child who had ventricles that could not drain the brain's cerebral spinal fluid because they were filled with scar tissue from the bleed, can now do that on her own without extra plumbing...

The messages I have been giving Ellie are that her body has amazing healing powers. That she is so very strong. All of the doctor's visits and the conversations have of course scared her as much as us.
The message is, your body is an amazing healing machine!

She gets a little smile when I say that too her...she's pretty patient with me...