When people refer to very medically-involved individuals there are 2 terms that seem to be used often- Medically Complex and Medically Fragile. Neither is really offensive, and there is no right or wrong term. Recently as I was explaining some of the vision behind Casey’s Circle and used the term Medically Complex frequently when referring to the population we serve, I was asked why I say “complex” versus “fragile”?

Good question! Casey was absolutely fragile when it came to her medical condition. Someone could be in the same house (never even coming on contact with Casey) and she could catch the slightest cold or flu that would often lead to much more. However, I never liked to think of her as fragile. She was invincible in so many other ways. She overcame more in her life than most of us will ever face. She was stronger than anyone I have ever known. When it comes to her perseverance and her determination, she was not fragile at all. She was more like a superhero than fragile.

When I think of the term Medically Fragile I think of babies, not Casey. I personally don’t like to use the term Medically Fragile when referring to Casey or other kids like her because I feel like it takes away from how strong she/they really are.

If someone else were to refer to Casey as Medically Fragile, I would not take offense to term, nor would I correct them. I personally chose to use Medically Complex. Casey was complex in many ways, medical is just one. If you prefer to think of your child as Medically Fragile, please don’t see us using the term Medically Complex as offensive. “To-may-to”, “To-mah-to”

Many people have heard the terms ‘circle of care’, ‘circle of trust’ or ‘circle of friends’. We purposely did not include an ‘of…’ in Casey’s Circle. When you have a medically complex child, you quickly start to build your circle. It is an all encompassing circle. You may start by adding care team members (doctors, specialists, etc), but your circle will grow to include home health nurses, therapists, teachers, social workers, support organizations, other children like your own, neighbors, family, friends, and the list goes on and on. Each child will have their own circle needs and some circles will grow to be very large. The biggest thing about a circle though is that if any part of it is missing or failing the entire circle feels it. That is why we are all about strengthening circles for medically complex children. By making sure that their circles are solid we can help improve their overall care, their social opportunities, and their quality of life.

When we first started with nursing I was very unsure of how things work. I would tell the agency we used the hours I wanted filled (within the amount of hours approved by our insurance) and they skills that we needed a nurse to have, but I didn’t feel like I could say much more than that. The agency would send out a nurse and I felt like I had to make him/her work.

If the nurse was not able to handle Casey’s needs, or if they made frequent/careless/serious mistakes then I felt like I could call the agency and ask them to send someone else. If they didn’t actually do anything wrong, but I never felt comfortable with them around or there were issues not related to a specific nursing task I felt like I had to just deal with it.

Eventually I learned that having an open and honest communication with my agency is crucial in getting the RIGHT nurses. The hours and skills needed is just the beginning. There are certain personalities that my daughter responds very well to, and some that she does not tolerate at all. I had to learn to tell the agency that I need a nurse that is energetic and will play with my daughter, not someone that is going to just sit and chart the entire time. I had to tell them that we could not have smokers at all. We need nurses that will think outside the box and are comfortable doing things a little unconventionally.

If there is a nurse that is very good at his/her job and that Casey seems to like, but maybe their personality and mine don’t click, those I do have to just deal with. The nurses are here to help care for my daughter. They are not here to be my best friends. Those that I may not click with I just approach it as I would a co-worker. We have to work together and we need to be respectful of each other. There are some nurses that I really like a lot, and if things were different I could totally see hanging out together. I am not friends with these nurses either. I enjoy their company while they are here, but to keep things professional and to make sure that nothing jeopardizes Casey’s care, we cannot be friends.

We have had nursing for MANY years now. I joke that I could write a book about all of the crazy as well as the amazing nurses we have encountered. Finding an agency that does a good job of background checks, screening, and calls references is very important. Even when you find an agency that is good about sending you top quality nurses, there will be some that slip through the cracks. You need to be able to honestly talk with your agency about exactly what you need.

One thing that I have learned is to trust my instinct. We have “Meet and Greets” with potential nurses. The agency does their thing and then sends them over to our house for a 30 minute meeting. During this time we talk about the schedule and their experience, and I am very clear on my expectations of them as well. It’s not personal, but some are good fits and some are not. I can usually tell in this meeting if the nurse is going to work out or not. Not all agencies offer this, but it may be something you want to ask your agency about.

The nurse is there to help. If you are not comfortable with your nurse or if while they are in your home you are more stressed than when they are not, you don’t have the right nurse. Sometimes we have to go through many nurses before finding the right one. Patience and communication are key!

Disclaimer:
I know a few families that have become friends with their nurses, and in some cases no problems at all, in some though the nurses started to take advantage of the friendship and the parents felt trapped. There have been some instances where the parents take advantage of the nurse’s friendship as well and make the nurse start to feel very trapped. A parent may not come home when the nurse’s shift is scheduled to end. Or a nurse may call out, but then the parent sees they were not sick but out at a party all night because they posted pictures on social media. I strongly suggest that while a nurse is caring for your child you maintain a professional relationship.