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Learning and trying to be kind and living my life as fully as I can stand it.

Tuesday, March 31, 2015

Recognition

I'm not a nurse but I play one one TV, I used to say. Or I'd reference my fake RN degree. A decade into my organ donation career I was more than familiar with certain lab values and vitals signs. Blood pressure, heart rate, oxygen saturation. I knew just enough to be dangerous, to myself. I'd seen patients like my son before. . .but they were dead patients who went on to be organ donors. To my eye he met all the signs and I started to be afraid that they just weren't telling us what they already knew.

Dopamine. Dobutamine. Epinephrine. These were some of the drugs streaming into his little body through needle-thin IV lines. I recognized these drugs as donor drugs--the ones that kept a heart beating and the blood pumping after the brain and the body were capable of maintaining these basic systems on their own. (Note: these drugs are also very normal drugs to give to sick patients in the ICU--so don't start diagnosing on your own please)

When I was an ICU patient my family started keeping a detailed notebook of all the things the doctors and nurses said, as well as all of my vital signs and important labs. This ended up saving my life at one point when my mom used it to question a decision a new doctor almost made and kept them from giving me massive steroids when I turned out to have an infection. It can be helpful as a non-medical person in a hospital environment to write things down. It's harder than you think to remember--you're under stress, things change quickly, you don't totally understand everything people are telling you. There are also a lot of shift changes in a hospital stay--nurses changing every eight to twelve hours, doctors changing at night and then every couple days or weeks. They strive for continuity of care and give one another detailed reports but everyone is different and has a different styles of care so it's good to be your own advocate and pay attention --the patient and the patient's family are one of the few constants.

I tried to do the same--starting writing down Cyrus' vital signs each time we went to the NICU. Looked up at that fucking monitor and transferred all the green and white numbers into a little journal. I did it a few times and then, back in my room after a NICU visit, I sat on my single hospital bed, shoulders hunched, looking down on those scribbles and I knew this could not continue. I had started to hear the name of my company,  the donor network, whispered in the unit. At least I thought I heard it. I was convinced that we, the donor people, were following my son as a potential donor. Writing down his numbers was like being at work, jotting down a referred patient's vitals as we tracked them to see how they trended. It was filling me with fear and a sickness in my belly. I even logged into our database looking for his name. More than once.

In that moment I became a mother. I think they were two or three days old. As I sat there on my bed I realized that the only thing I could do, the best thing I could do, was love that baby with all my heart. Pour my love into him, even if it broke me open and left me unable to recover.

The thing was, I felt him in there. In his body. As the doctors grew graver about how little he was responding, how motionless he was, I held my hand on his little body and I knew my son was alive. Not just hanging on to life but alive, in there, working hard.

There were many times in my career where we worked with families to come to terms with the fact that their son or daughter, father or wife, was dead. Yes, we'd explain. They look alive because the machines are breathing for them. Brain death is actual, legal death. When the doctors do their exams and write those notes, that time of death written in the chart is the person's actual time of death even though he is still laying in bed, chest rising and falling, skin warm. Some people tell us they knew the moment their loved one left their body. They'd say they knew he or she wasn't there anymore. Other people could not accept it. Did not believe it.

I thought of those families with so much more understanding. As I stood by my son's bed, talking to him, singing to him, feeling his warmth, feeling his spirit under my hand, I wondered if it was just the strength of my hope that was telling me he was ok.

I called my friend Nikole and told her I needed her to come. Nikole is a doctor--a transplant surgeon. She is also the medical director of the organ procurement organization I worked for at the time. She is also a mother of twins--they were two months old at that time Lily and Cyrus were born.

"I need you to come look at him and tell me what it going on. I need you to talk to the doctors and look at his vitals and tell me what happened and what is happening. I know too much and not enough."

So she came.


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