Every Thursday I look back at a specific day and time that was spent with my daughter Matilda as she waited for, received, and recovered from a liver transplant. She was in the hospital for 72 days and we remained in NYC until she turned four months old.
October 12th, 2012
And just like that, Matilda turned three weeks old.
One of the most frustrating aspects about living in the PICU was not being in control of Matilda's care. When I hear a baby crying I get a fierce urgency, an overwhelming need to do something. You can imagine the helpless feeling a parent of a sick child can have.
So, I can see how some parents lose their cool and end up taking things out on doctors and nurses. But people, that is the fastest way to lose respect and likability in the hospital setting. Parents can either make doctors and nurses feel comfortable and confident or they can set an anxious and uncomfortable tone. Relaxed parents equal relaxed caregivers which, in my opinion, transfers to an increase in the quality of care. It is as simple as that.
During the next two weeks we were "entertained" by the parent who resided on the other side of our half wall/curtain. She made everyone feel uncomfortable. Her baby was relatively well compared to the other kids in the PICU - only under observation per her request. She watched every single move that anyone made and reported "errors" by email and phone to administrators dozens of times a day. She would take the monitors off of her baby to time the nurses and doctors and test their awareness. She wore us down mentally and we had nothing to do with the situation. We were flies on the wall and learned so much about human (mis-)behavior.
I am not by any means saying that we were perfect. But we were respectful, we made allies whenever possible, and we tried to be genuine. We had nobody. We were over 2,000 miles away from our family and friends. The PICU at Mount Sinai took us in like we were family. And we were thankfully blessed to have them. Nobody is perfect, but this crew came pretty darn close.