“Narcoleptic” Nursing
This topic surfaces about every other week in my circle of parents with children with complex medical needs. The topic of home nursing is always laden with challenge & pitfalls. To be clear: there are wonderful and professional men & women in the field of nursing, some of whom work in Home Care. As a parent of children with special & complex health care needs, I learned quickly that the majority of home care nurses do not have the skill set necessary to function well & adequately care for my children in my home.
Some nurses we meet are aloof & “all business”. They stand in my playroom, paperwork clipboard in one hand, stethoscope in the other. They attempt to “provide treatment for” my children’s “conditions”- not “provide care” for my children. For these nurses, I used to try to engage them around playing with my kids- but it’s never worked. Now when I come across these nurses, I tell them it’s not a good match.
There are nurses who are too far in the other direction: all play & rough-housing (with TRACHS!?!?!)- while forgetting to assess respiratory status, follow the medication schedule, or feed the children throughout the day. There are nurses who attend to all stimuli as the same level of importance, and those who over-focus on one thing & don’t realize my kids are struggling to breathe… Nurses run the full range of competence in the home setting as in a hospital- but without direct supervision or ongoing training, other than the skills of the parent.
One of the more dangerous behaviors common in home nursing is sleeping while on shift. I have caught numerous nurses (more than 10), sleeping during an overnight shift in my home with my two trached children. Friends have stories of nurses napping with children during the day, or falling asleep in a rocker while a medically complex child plays nearby. The most amazing part of this for me is that people sometimes feel like it is “no big deal”- & by people, I mean some parents &, almost always, the nurses who do this.
Have YOU ever been paid to sleep? It’s a JOB. Nurses are paid to monitor, NOT sleep. I’d argue that, if “it’s ok for a nurse to sleep”, the child doesn’t need a nurse and insurance shouldn’t pay for one.
Alarms fail. Even skilled assessment can fail our kids. Using these in combination is always safest- and usually most appropriate for complex medical kids with & without trachs. It is, unfortunately, also common in my circles to hear about a child’s self-decannulation & death. Skilled home nursing support is essential to the success of families trying to care for their complex medical kids at home. No sleeping on the job.
