For most families it's a struggle. Why? You are entrusting the care of your medically challenged child to a complete stranger. Most families have to work to make a living & the nursing helps make that possible.
Having no experience with home nursing I really didn't know what to expect. I have a number of friends who are nurses (RN's) and I guess you could say that I was spoiled. If I didn't know my nurse friends & strictly went on their work ethic I know that Mylah would be given the best care possible if they were her nurses.
I was warned that nursing would be the biggest adjustment once we were back home. BOY if this isn't the most HONEST TRUTH yet. Of course no one will take care of Mylah like we will, but I have high expectations. Why wouldn't I?
It's known that children don't come with instructions... WELL in our case Mylah does. One mistake can mean life or death and I'm serious when it comes to her health. The care that she needs can't be underpar. There's no compromising or negotiating. It's black and white.
There is no more privacy. Having a person come into your home to provide care for our child 7 days a week for 10 potentially 12 hours a day. We are basically gaining another member of our household & our current house doesn't allow for us to be in one room and them caring for Mylah in another. Since this is so new to me, I'm that mother who is present at all times. Watching, Observing, Instructing, Teaching. This will soon change as I prepare to return back to work. I've had 1 week to get "adjusted" to these new people, but what do you do when the ones who've been sent, don't fit the mold?
Home nursing is a service that is being provided and customer service is still critical. There have been some behaviors exhibited that have left me to question whether Juwan & I can survive on one income and I'm serious. I need to be able to leave my home and have some sort of comfort in leaving Mylah in the hands of a trained professional. The training is important, but the professional part is what is lacking.
I want people to feel comfortable, but not TOO comfortable. This last week has shown me what the other families struggle with & now their struggle is also ours. It's a huge adjustment to go from living in the hospital for the 89 days to coming home expecting the same type of care but not receiving what I'd anticipated. I want the best, the most attentive, one who cares, & listens. I need someone who will know what to do in an emergency and isn't just doing the work for a pay check. If there's no passion behind it I think this makes a HUGE difference.
Do you see why you have to pray over your children? And those who come in contact with them?