I work on a unit with lots of chronically ill kids who end up being too much for their families to care for. We have several ped LTC facilities in our area and many of the kids live there. I understand that some families cannot care for the kids at home but they still visit them and love them and make them part of their lives. I am talking about the kids whose families have detached and moved on, who never visit or call. And yet they are able to still make medical decisions for their children, including DNR or hospice or palliative care.
We have kids who do live at home but are regularly dropped off on the unit, just admitted and then the families leave and never call or show up to visit until discharge time. Or, we are considered babysitters, especially on weekends and holidays. Since they are complex we can't discharge right away even if they are not far from their baseline. We have to admit them and make sure they are stable and that can take a few days.
If families of non-medically needy kids did this, it would be considered child abandonment and the parents would lose their legal rights after a time. But time and time again I see these no-family kids in and out of the hospital. The saddest ones are the neuro-intact kids who would thrive in a family home, even a foster home would be so much better than LTC. They are so hungry for social interaction, and we cannot spend our entire shift with them, and the staff are not there long enough for these kids to form a bond with anyone. They spend their whole lives in climber cribs and learning to soothe themselves to sleep and dealing with boredom. I so wish we had more medical foster care families that could take such children.
Then there are the neuro-devastated kids, the ones who really and truly are so far gone they are just a body with reflexes, and they react to pain and not much else. Their parents sign papers to do everything possible to save them from their multiple medical crisis that come up due to their being bedbound and total care, and yet they never show up for surgeries or recovery or anything else. They just give instructions to keep saving the patient. At Christmas or the child's birthday there are no visitors at all much less any other time. We have children that come and go often, and I have never ever met any family for them.
It is not my place to make decisions other than how to best comfort and care for them during my 12 hour shift. But I feel like no one is really wanting to get their hands dirty and make some decisions for these patients at all, so they just linger in their vegetative states for decades. I can't even imagine the cost financially, but I see the physical costs.
When is someone going to pass some laws or *something* to keep these kids from falling through the cracks? Because that's what seems to be happening to so many of them, and with better medical science the numbers are increasing all the time.
