As a clinical manager for children who deal daily with machines, alarms, and tubes I can tell you that it is stressful for the caregivers of these children no matter how much these kids are loved. Here are a couple of things I have discovered about life with these kids:
These kids are loved by parents, aunts, uncles, nurses, grandparents, and friends. These same parents, aunts, uncles, nurses, grandparents, and friends have lives outside the center of the care of these kids and that life gets put on hold spontaneously and frequently and at the worst possible moment.
This fact means that flexibility is your new best friend. Flexibility must be at the core of those who care for these kids because these kids get sick, equipment fails, nurses call off, home care works when kids aren't hospitalized and when the caregivers show up and the weather is sunny, and the list goes on..... NO Day is the same and routine takes on a whole new meaning.
As a clinical manager, flexibility must be my new best friend as well. I may need to make an unexpected visit to a home, make numerous phone calls, attend a case conference at the spur of the moment, or any number of activities that take me away from the paper work and physician calls I planned for the day. But these unexpected events happen because we put the care of the child first.
It takes a team and teamwork to care for these kids at home. It can be challenging and hard work for less pay than a traditional hospital setting. But you know what else I have learned? It is well worth it because these kids want to be a home, they do better at home, and I love to see kids smile.
So for those caregivers, parents, nurses, and family members who care for kids with challenges in their home setting, God bless you. The child in your life appreciates it, even if they may not be able to communicate it any other way but with that smile. You make a difference and it matters.
