Casey, like many kids, has a condition that is considered degenerative (it gets worse over time). This is not always obvious since her personality gets bigger, but her internal systems get weaker and more impaired each year. What does this mean for nursing?
As Casey’s medical needs increase it would only make sense that the amount of help we need would also increase, as would the level of skill that help provides. Not exactly. Getting increased hours (more help) can be a lot of work. This is when you really want to be sure that you have a good nursing agency on your side. A good agency will know how to present your needs to insurance and/or medicaid in a way that will clearly prove your needs.
Then, lets say you do get more hours, that doesn’t always mean a nurse is ready and waiting to fill those hours. You may have a nurse, or team of nurses trained on your child’s needs, but they may already be maxed out on the hours they can work (personally or professionally). You may have to hire additional nurses to fill the additional hours.
Depending on where you live, you may see ebbs and flows in available nurses. Sometimes there seems to be many to chose from, while other times we have had to wait for months for the right nurse to come along. This can be helped by using the right agency as well. You want to find an agency that identifies when there is a shortage and has proactive recruitment plans in place.
We have some nurses that have been with us for many years. As Casey’s needs increase they are learning to provide the additional care along with us. They may have experience on equipment we don’t and they can provide some additional training. In many cases though, we learn it together. Each time we have to bring in a new nurse it is a little harder than the time before. There is more to train the new nurse on, and Casey is bigger and harder to manage.
I still look back to 9 years ago when Tim and I tried to do this all ourselves. Yes, Casey had less needs back then, but she was still very involved. Now I can’t imagine not having help.
As Casey becomes more and more complex there is a lot of stress and anxiety that we deal with as her parents. Are we doing enough? Should we do a certain procedure? Can we get the equipment she needs? How can we adjust to this new symptom/treatment/whatever? Our concern for her needs and health are always growing. Having to add the additional stress of getting more help and/or training the existing and/or new nurses to meet her needs can sometimes be overwhelming. This is not what I planned to be doing 10 years ago- not at all. I was supposed to be taking her to sleep-overs and helping her with her math homework, not training nurses on how to protect her airway and prevent skin breakdown.
We have had amazing and horrible nurses as well as amazing and horrible nursing agencies. Finding the agency that will support your needs and building a team of good nurses makes all the difference. I still get very anxious with new diagnoses, equipment, etc, but knowing that I have a team that I can rely on makes it a little easier.
This article was originally created for and published by Pediatric Home Service