Start to a new journey

So begins my cathartic journey. I’ll start at the beginning.

He was turning purple. Gurgling rather than actually breathing. Movement and voice came to me instinctively, not with the strategic thought I counsel clients to take. I was talking to the 911 operator at the same time I was trying to capture the attention of my momentarily conscious husband. My children were standing over us.

What assignments could I give them? I sent my son to the door to meet the paramedics. In the chaos, I forgot to assign my daughter a task. When the paramedics arrived, I brought the children to the nearby room and asked them to stay on the couch.

I had the unconscious audacity to ask if I could accompany the ambulance. The paramedic looked at me and said “what about the children.” Oh yeah.

As I drove to the hospital (after making arrangements for the kids), trailing the ambulance by roughly 15 minutes, all I could think was “I do not know his master password so how will I know what to do?” My tactical, logical mind was on overdrive. I wasn’t really thinking long-term, but more short-term: how will we get along while he gets better.

Reality sunk in about 25 minutes later when a doc came to me – where I waited with two of our close friends who had already arrived – the doctor said “we’re going to try to resuscitate him for another 15 minutes and then we’re going to stop.”

How do I even begin to process that? 10 minutes later someone came out and said, “we think we’ve stabilized him.” He had a truly massive pulmonary embolism. Somewhere between the size of a dime and a nickel. It stopped his heart multiple times, he required CPR over and over, and his brain experienced significant oxygen deprivation.

For a full week, I didn’t know if he would survive. I still don’t know if he’ll be whole. I am still most concerned with the neurology. It would be so horrible for our family if he were physically sound, but mentally lost. This will be an interesting consideration later in the story.

In the first week I learned some really important lessons:
• Family doesn’t always behave as you expect
• Your most true friends surface quickly (literally within minutes and hours)
• Without an advocate, patient success and continuity of care is tenuous

Let’s talk about that last one right here and now.

Had I not had experience in healthcare and the hutzpah to lead, my husband would have been left without an advocate. In the first 5 days, I attended every shift change, every physician round – every conversation I could insert myself into to understand the situation and options. I asked a lot of questions. I listened. I kept a journal, writing down what I could. My iPhone became my record and my only communication device.

On the evening of the fifth day I was asked to leave during a shift change by a nurse who claimed their policy restricted my participation. When I objected, they brought in a burly male nurse – the bouncer. I eventually left and wound up missing this shift change and the next.

The result was I presented our story at the next C-suite meeting (a few days later) for the entire corporation – a corporation that was once a client of mine. The leaders in the room made me aware that they wanted to change the culture of the organization to one that integrated the family/patient advocate into the care team. They have a long way to go.

I won my place back into the conversations and have been there ever since. This story isn’t over. There’s a lot more to tell. In this brief seven weeks I’ve seen the communication and the process missteps – the healthcare industry has so much to learn and so much change to make. I’ve always known this to be true and have said for many years that the things our legislators discuss are the wrong things. Now, I’m living it.

Before I close this post, I want to give a big, grateful hug to my IABC community. My colleagues and IABC friends have been a strong force in this experience. More than ever before, this community has given me strength and resolve I didn’t know I had. Thank to you all for your ongoing support, prayers, positive vibes and hope for our future.