Casey's Circle

Casey's Circle

Strengthening Circles – Improving Quality of Life

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Monthly Archives: March 2016

Nursing – Increasing Care Needs (Part 4)

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, after reading this laweekly article we decided to start using CBD as a treatment, but the question here is what does this mean for nursing?

supplyclosetAs 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.

please no more

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

March 30, 2016 Leave a comment

When All That’s Left Is Love

by Rabbi Allen S. Maller

When I die
If you need to weep
Cry for someone
Walking the street beside you.
You can love me most by letting
Hands touch hands, and Souls touch souls.
You can love me most by
Sharing your Simchas (goodness) and
Multiplying your Mitzvot (acts of kindness).
You can love me most by
Letting me live in your eyes
And not on your mind.
And when you say Kaddish for me
Remember what our
Torah teaches,
Love doesn’t die People do.
So when all that’s left of me is love
Give me away.

March 20, 2016 Leave a comment

You Meant So Much

by: Cassie Mitchell

You meant so much to all of us
You were special and that’s no lie
You brightened up the darkest day
And the cloudiest sky

Your smile alone warmed hearts
Your laugh was like music to hear
I would give absolutely anything
To have you well and standing near

Not a second passes
When you’re not on our minds
Your love we will never forget
The hurt will ease in time

Many tears I have seen and cried
They have all poured out like rain
I know that you are happy now
And no longer in any pain.

March 20, 2016 Leave a comment

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