Month: February 2013

Well, happy Sunday, huh?

A couple months ago, I volunteered to speak at an Ethics conference about Do Not Attempt to Resuscitate (DNAR) standards in terminally ill children.

My conversations this last week went somewhat like this….

“Heather, what are you doing on Friday?”

“Well I’ll tell ya, I’m speaking about do not resuscitate standards in terminally ill children.”

I would get one of two responses. The first would be a shudder the second would be a comment such as…..”Well, that sounds about as much fun as swimming in quicksand with a nest of angry rattlesnakes.” 

And then I would say, “Are they angry because they are in quicksand or just because they are rattlesnakes?” It was about that time that I would loose my audience….because there is no joking about rattlesnakes when taking about a DNAR on terminally ill children.

And they are right, there is no joking.

But there should be talking.

Because a very large population that we serve has thought of or had to deal with the worst thought possible….will my child die from this disease?
 
or when will my child die from this disease?

All you need is a couple trips to the ICU and this does become a very really possibility. And the last thing these families need is for the rest of us to shy away from the very real possibility they are living with everyday.

So on Friday, at the Children’s Hospital Ethics Conference, we did not shy away from this conversation. We talked about it openly with Doctors, Nurses and Parents; talked about when these conversations should be had and the importance of a medical community being open with families.

Our own lovely Maria Hopfgarten talked about our Jacob and the conversations they have had about end of life care.

At 12:30, I was scheduled to speak at Grand Rounds about what could happen if a terminally ill child died at home without legal documents such as a CPR Directive or DNAR. This would be the first time I talked publicly about the last day with our girl.

I didn’t eat lunch, because I felt like I would loose it. Instead, I walked outside, looked up at the sky and asked Samantha for help, if it is so important to talk to these doctors and parents, I need you here.

And I felt that she had landed on my shoulder.

And I felt better.

I talked openly about our investigation with the Sheriff’s office despite Samantha’s numerous and life-threatening conditions because we did not have legal documents in place.

Because we did not feel like she was in a life-threatening place.

Until she was.

I spoke for ten minutes which felt like the equivalent of a marathon. The remainder of Grand Rounds was about getting these documents in place and the changes that have been made at Children’s because of our experience with the Sheriff’s office. When we ended, my knees could not stop shaking and I needed a nap.

But ironically, I could not stop smiling. Our girl, as always was changing lives and making an impact. And as always, it’s when I’m doing this work, that I feel so close to her.

Thank you Children’s for having these hard conversations.

Please ignore the fact that this is my first post of 2013.

One of my 2013 goals was to write more often……

hmmmmm……

But the New Year has not been wasted- much progress has been made even though it has not been documented.

New Year’s Eve found me at the dump.

I love the dump. Really I do. Where else can you drive in with a car full of crap, drop it off with no questions and drive out? Fabulous. I even get a bit of a dump attitude….that’s right…I’m cruising at the dump…in my station wagon…..and baseball hat

I wave at the other dump-goers but they never wave back. I think they know I’m a bit of a poser.

And why are there sea gulls at a land-locked dump? I think sea gull is tad generous. Dump gull would be more appropriate.

2013, at the dump- cleaning out the house.

And so the rest of the month has followed that theme- the cleansing of our home.

In January we gave Samantha’s bed to a lovely little girl who needed it….which was cleansing, healing and sad. Better than the dump and without the birds.

That day we packed up the bed, packed up the Christmas decorations and I promptly came down with a migraine….which is also for the birds.

My new 2013 cleansing also brought a new therapy….trauma therapy.

I decided it would be nice to have an ambulance pass by me without hyperventilating and to deal with some leftover PTSD.

“Why do you want to do this?” My therapist asked

“Trauma therapy?” I thought about a snarky comment, because the bamboo I’m sticking in my toe nails isn’t sharp enough? But I knew she would want a real answer. Silly therapists and their real answers. So I came up with one….

“My mental basement is flooded and I need to drain it. You can live in a house with a flooded basement- just stay in the living room and the upper floors but sooner or later that stinkin’ basement starts to smell….and collect crazy bacteria….and ruin your keepsakes and the carpet. I need to drain my basement.”

My therapist nodded and smiled, “Let’s pull out the Draino.”

Happy 2013.