Wednesday, September 3, 2014

Wow, the difference a year makes. That and a working heart!

One year ago, almost exactly to the minute, I was just getting comfy in an almost empty waiting room inside Boston Children's Hospital. 
Waiting room. 
What an appropriate term. 
I was waiting for news Ethan had been successfully intubated and was doing well in his cardiac MRI. 
I was waiting for news he was now getting his echo. 
I was waiting to hear they had moved him to the cath lab, gained access, and begun the cath. 
I was waiting for my husband and sister to arrive from KC. 
I was waiting for answers. 
And I was a nervous wreck. 

When Nurse Kate called and excitedly blurted out "they got it in!  Meet Dr Porras in the consult room", my waiting was over. 
I think I finally breathed. 

One year ago I handed the bald kid over to a bunch of strangers who were attempting to do something that had never been done before.  Something that doctors that had known the bald kid all his short nine years of life-and before he became known as the bald kid-said they couldn't, wouldn't, attempt to do here. 

One year ago we left KC with the thought in the back of our minds like a huge pink elephant in the middle of the room that we would travel to Boston as three, and return as two. 
We made arrangements for our other kids to get to Boston in a hurry if needed. 
Arrangements for a transfer back to KC and a doctor who would accept him for compassionate care if needed. 
Arrangements for the bald kid's funeral. 

We went to Boston not knowing what, if anything, they could do to help him. And though it sounds morbid to some, the only thing I knew I had control over were making those arrangements. 

We left with so many what-ifs. 

And returned with a miracle. 


A year later the bald kid still has a perfectly functioning Melody Valve. 
A normal functioning right heart with great pressures.  No leakage, no pulmonary edema, no pulmonary hypertension and no need for oxygen. 

He has gained 11 lbs and grown 2.5 inches in one year.  The kid who weighed 36 lbs for 4 years gained 11 in 12 months. 
He's sitting up unassisted for longer periods of time. 
He's staying awake during the day, all day. 
He's happy and healthy and only had one hospital admission in the last year. 

He's a miracle, a success story to rival all success stories, he's amazing. 

And he's still here. 

Thank you to everyone who helped us along this journey and kept the bald kid in your thoughts and prayers. 

It's amazing what can be done in a year with a heart that works.