Tuesday, February 21, 2017

Day 21 - Josie NiNi

It wasn’t too long after I signed up to write an update on our Ms. Josie that I started to wonder what in the heck I’d done. 

It isn’t that I don’t like to tell her story - it is a sweet and amazing tale (if you want to read the start in detail see here.  God did some pretty incredible things to put this girl into our family), but to my mind a story should have a beginning, a middle, and an end. 

We have a beginning (or two), a middle . . . but we have no end.

The short story is - Josie was brought home with the doctors thinking they knew what her heart condition was - and the doctors were wrong. 

She was declared inoperable by our local Children's Hospital.  The pressures between her heart and lungs were measured at 4.5 - Operable is under 4, normal under 2.5 or so... Operating was too risky.

So we sent for second opinions - and CHOP and Stanford presented us with plans for a partial repair to take some of the stress off her heart. 

Sanford had the “safer” plan, so we scheduled.  And a few days before her surgery the PH specialist sent an e-mail saying they felt they could do a complete repair.  And so we did.

Josie came home on oxygen a medication inhaler 3x a day and looking and feeling pretty good.

But here is what I found out later.  Josie’s heart defects meant that exact measures were not possible.  Her pressures were not 4.5.  They were a frightening 14-15.  It had been so much worse than we thought.  I still don’t know if that surgery would have happened if they had known her true measures.   The surgery dropped the pressures to 9.  Still severe and scary high.

And then, a few months later, during a regular checkup, we found Josie was in heart failure.  She needed to go back to Stanford again. 

This time she came home on stronger medications given through a 7x24 pump system.  She carried a pump on her back 7x24 for the next 3 years.  No swimming, no vigorous sports.  But the medications kept her out of heart failure and growing.

We had hoped that the stronger meds would allow her heart and lungs to heal as she grew.  For her that has not happened.  She has stayed steady at 9 - no better, occasionally worse.

A year and a half ago we had an opportunity to enroll Josie in a clinical trial for an oral medication to replace the pump. We jumped at the chance even though this medication has pretty mixed reviews.

It was tough.  The switch took a week in the hospital. 

We had to fly to Stanford as often as every three weeks.  And the side effects were nasty.

But the medication came close enough to working that we were able to pull out her central pump line 10 months ago.  We got a summer with no pump and swimming and BEACHES.

We are still increasing the med to see if we can get her to a better place medically. 

But here is the thing about heart kids.  They are pretty awesome little people. 

Our Josie has decided not to worry. To just live live with the pumps and without them.

For someone who has had so much hospital time she has very little medical anxiety.  She has a brave heart, and a kind one. 

Josie knows the value of family and loves us to pieces. 

She is very aware of others hurts -and very kind and thoughtful to others.

She patiently works so hard to overcome.

She has very little fear (maybe more might be good).

This child needed us to survive.  What we didn’t know was we might just have needed her to really live.  In so many ways this brave brave child is our hero.   She has been the teacher as well as the taught.

We would have an easier life if we had passed on her file, but we would not have had a better one.

Need a hero in your life?  Just asking . . . .


Andrea Olson said...

I loved learning more about Josie! Thank you, Kim!

Post a Comment