Guest blogger Scott Newport is the father of three kids: Chelsea, Noah, and Evan. Evan lived with Noonan’s Syndrome for seven years. Scott’s story will help you understand why Evan lived far beyond the two years life span his doctors predicted.

Scott Newport’s Special Needs Motto? DNR

Evan was a complicated kid with more than one diagnosis and a standing DNR order. For those who may not know what that represents, it is an acronym for Do Not Resuscitate. Evan’s heart was so sick the doctors told us if it ever stopped it could get very ugly trying to revive him. They left it in our hands to make a decision no parent should ever have to embrace.

Our family was back at C.S. Mott children’s hospital at the University of Michigan for a simple, surgical procedure to revise Evan’s trach site. He was ventilator-dependent requiring a small hole in his chubby neck allowing him to breathe. Our home care nurses had been having difficulties with weekly trach changes and were afraid to do the procedure alone. Penni and I learned to deal with the challenge but were not always around to help.

The morning of the procedure Evan spiked a fever and everyone soon agreed it would be impossible to continue.

“Well I guess we should just had back home,” I said during morning rounds.

The resident looked at me and said, “We need to do some tests first to make sure we know what we are battling.”

As the team shuffled out, I wondered how long we would be here. When Evan was born four years earlier at Mott and we had endured 252 days in the PICU leaving with a diagnosis of, “Children like Evan usually don’t live past the age of two.”

I immediately called my parents and a few other friends and told them the news of the canceled surgery and not to come. My next call was to Nancy, one of Evan’s cardiologists. She had always been an advocate for us and also had become a good friend. She asked me what I thought and I said, “Well you know Evan, no telling what’s going on with him but Penni and I are not too worried and hope to get out of here soon.”

Nancy told me to call her tomorrow with an update.

The next morning at rounds there was still no clear answers but Evan still had a fever, required a bit more oxygen and no one seemed to know what was going on. The wandering eyes of the medical team didn’t even have to speak for me to figure that out.

That night one of our home care nurses came up to visit us enjoying the hour it took to rock Evan asleep. As we sat in the four bed ventilator ward with other families just like ours behind pulled curtains, we discussed our desire for Evan to go home where we could take care of him. If he did end up getting really sick and looked like he may die we wanted him in our home ICU where we all felt most comfortable.

The next morning got a bit more frustrating, as by then, even the attending physician was not sure why Evan was sick and wanted to do more test. Again I brought up the going home issue but they continued to press it was impossible.

Starting to get angry I walked out of the room and called Nancy. “Hey Nancy we want to go home but no one is listening.” She then said something I will never forget and was able to use again and again for the next few years on our families behalf. She said, “Scott, tomorrow at rounds ask them this…”

Well tomorrow came and as it was my turn to speak I said, “Hey guys, what are you doing here in the hospital we couldn’t do at home?”

As you can imagine everyone looked at each other and then the attending doctor said, “Well Scott and Penni, I’m sure you guys are probably better than us at taking care of your son. Let’s see if we can’t get you discharged this afternoon.”

It was great and even our bedside nurse said she had learned something that day also and giggled as she started to do her morning work with Penni to get Evan ready to go home.

And yes, as soon as the team of residents, fellows, a respiratory therapist, social worker, charge nurse, and the attending left, I called Nancy. I could almost see her smile through the phone as I thanked her and thanked her for all she had done for our family for the past four years.  She just came back with, “You know Scott I have always thought of your family as special and will always be there for you guys.”

Remember in the beginning when I told you about Evan’s DNR status? Well, our family has our own definition for that acronym. In fact the day after we had to sign that order, when Evan was about eleven months old, I took a piece of paper of paper toweling (also know as hospital stationary) and a blue marker from the nurses’ station. Then I had this acronym posted on his PICU glass door for all who entered our world:

Do
Not
Retreat

Not everyone who passed that sign back then got it, but almost all of them, if I asked today, would agree the sign was a good thing, making us better partners with patients and families.

Has your child been hospitalized? During that stay, did you employ Scott’s DNR acronym? If so, leave a comment about how you

Did
Not
Retreat

in the box below.

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