Optimus Primary

Day 35 in the Rory saga. Our heroine remains in the NICU, where she faces her biggest adversary yet, the bureaucratic health care system itself. Don’t misunderstand; we feel the standard of care we have received at Rady Children’s Hospital has been unquestionably excellent. But we have noticed a steady stream of new nurses over the last few weeks, sometimes for a single shift only. This weekend, we had four completely new nurses (who were all great by the way). But we have also received questions similar in nature from several sources: “Who is Rory’s primary?” So we put two and two together, and now understand that it is not uncommon for specific nurses to be assigned to specific patients for the duration of their stay.

The concept of a primary nurse sounds pretty darn simple and logical once you say it out loud. With a primary nurse, they wouldn’t have to give the entire 35 day history to a completely unfamiliar nurse at each shift (every 12 hours), just an update since the last time they were on duty. A nurse that is intimately familiar with a patient is more likely to see the signs of change in a patient, especially if that patient cannot speak. A nurse that is intimately familiar with a patient is more invested, and can work as an advocate for that patient, especially when there is also a steady stream of doctors and nurse practitioners interjecting their big ideas into the treatment process. A nurse that is intimately familiar with a patient’s history is more likely to prevent both minor missteps and major catastrophes alike. A primary nurse can act as a lighthouse; providing guidance, direction and translation to parents desperately trying to navigate their child to safety. So yeah, the concept seems like a good idea.

When we have known that a particular nurse would be on the shift, we have requested they be assigned to Rory. We have also been told by several nurses that they have requested Rory for their shifts. But since none of these requests ever get filled, we are left to wonder if the only thing a request gets you is somebody else assigned to that shift. We were a little shocked to hear about this concept of a primary nurse, and have requested a meeting with the social worker (which, ironically, they assign as soon as you step into the building) to see what can be done. More on this as it unfolds…