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An open letter to nursing students: Five perks of pediatric home care

November is Home Care Month, and to celebrate we wanted to take the opportunity to hear more from the families who are able to be at home with their children as a result. Today, we will hear from Hillary, whose daughter, Esmé, has home care nursing.

Hillary Savoie, PhD. is a mother, foundation president, blogger, and writer. Her writing has also appeared on a number of websites, including Motherlode, the New York Times parenting blog, The Mighty, and Vector, the Boston Children’s Hospital science and clinical innovation blog. This year she published two micro memoirs about Esmé’s life: Around and Into the Unknown and Whoosh. She is the founder and director of the Cute Syndrome Foundation, which is dedicated to funding research into Esmé’s rare disorders.

Dear Nursing Students,

As you are considering the path your career will take, I’d like you to stop for a minute and consider taking a job caring for medically-complex pediatric patients in their homes. It isn’t a job many students consider, but it is an important job.

IMG_0037_2502Every time I place an ad for a new home care nurse I find myself holding my breath, hoping the ad will reach the audience of nurses I am looking for: hard-working, professional, kind, prompt, responsible, curious nurses—who also happen to be fun, kind, and happy to snuggle with my beautiful, bright, enigmatic daughter, Esmé. Many of these nurses exist. I know they do. I have met them in hospitals and in our pediatrician’s office. We have hired a handful of nurses that meet that description over the last few years to care for our daughter—wonderful nurses who we would have kept forever, but who have had to move on after years with us—but they are not easy to find!

It seems that there just isn’t a large enough pool of good home care nurses out there. I think that this is the case for a number of reasons. However, most of these reasons seem to boil down to a lack of understanding of what it means to be a home care nurse. So let me tell you a little about home care nursing. Here’s why this will be the best job you will ever do:

  1. IMG_1234_250Excitement: OK, so sure, it isn’t Emergency Department exciting. I get that. But when caring for Esmé, you never know what you are going to get. From one night to the next you may feel as if you are on neurology, pulmonology, neuro-psychology, or gastroenterology service. Some nights the job is suctioning and chest PT. Other nights it is snuggling and seizure monitoring.
  2. Independence: Home care offers a unique chance for a capable and independent nurse to follow a limited number of patients for a long period of time. In these situations eventually the nurse understands Esmé so well that he or she can predict variation in Esmé’s medical condition far before an unacquainted medical professional could. This is how, for example, our former nurse Gretchen caught pneumonia not once, but twice, based on the slightest change (unheard in the doctor’s office) in Esmé’s lung sounds. Gretchen’s early detection of pneumonia, confirmed on x-ray, saved Esmé a lengthier illness and a probable hospital stay.
  3. Quiet Downtime: Because from night to night you’ll never know what is going to happen, there will be nights when not much happens. These nights have been used by our nurses to study, read, organize photo projects, and all other manner of things you absolutely couldn’t do on the hospital floor while working.
  4. IMG_9766_250Professionalism and Flexibility: In our home we expect nurses to act as professionals—complete with timely arrivals, positive attitudes, and good communication—but we also know our nurses as people with complex lives. So, we have worked around scheduling changes, holidays, special events, losses of loved ones in ways that most hospitals and offices could not do. Families like ours will take a long-term view of their best nurses, working with them as their needs change.
  5. Fun: So, there is a distinct lack of on the job social interaction with peers, however, you get to hang out with Esmé, one of the silliest, sweetest, most engaged kids you could imagine. This means you will be one of the only people in the world to understand her non-verbal cues, her goofy likes and dislikes… and many nights she will be waiting up just to see you for an amazing Happy Hour—Onfi for her, caffeine for you!

What I want you to remember as you weigh your options about your future jobs, there are so many kids out there just like Esmé—kids in every state who need special nurses to help keep them safe in their homes with their families. Kids who want you to be their nurse. They’re waiting for you.




Originally published: November 19, 2015