Tuesday, February 16, 2010

A Day Behind...

I totally missed my Monday Mom Spotlight yesterday. I know who I am spotlighting, but with it being a holiday it didn't feel like a Monday!! I will post about Xangelle and her awesome creations next week.

So, I guess it really is Tuesday and that means work placement for me again. I really do enjoy the job, I enjoy the people I work with, and I enjoy learning how much further I can be stretched each night, but the nursing home just isn't for me. I am eager to get into the community and see how I feel about working in a different setting.

Pete keeps joking with me that I will be one of those people who goes to school, becomes certified in something and will do a totally different job...I keep reassuring him that this is not the case. I just need to find my niche:-)

My week will consist of talking with residents, helping them prepare for bed, bathing and showering some residents, and lots of other things. We also have some homework assignments that I need to focus on too. One about medication and another about the care plan and how we care for a resident based on it.

I have met someone that has me thinking a lot about end of life issues. Also about quality of life. When Faith was born that was a term that they threw around a lot!! We should pull the plug because she won't have a good quality of life. I argued back, who decides what is quality and what is not? I still have that stance, but now there has been some other feelings going through my brain.

This person had a brain stem stroke. The brain stem pretty much controls everything!! An excerpt from a website:

What effects can be seen with a stroke in the brain stem?
The brain stem is
located at the very base of the brain right above the spinal cord. Many of the
body's vital "life-support" functions such as heartbeat, blood pressure, and
breathing are controlled by the brain stem. It also helps to control the main
nerves involved with eye movement, hearing, speech, chewing, and swallowing.
Some common effects of a stroke in the brain stem include problems with the

breathing and heart functions
body temperature control
balance and coordination
weakness or paralysis in all four limbs
chewing, swallowing, and speaking
death is common with brain stem strokes.
So, if you have a brain stem stroke, and you survive due to the life saving measures, you can be affected in any or all of these areas. It means that you can be left with a feeding tube, a tracheostomy, totally paralysed. Boy did this bring back memories for me!!

This brings me back to our meeting with the dr's. When they told us we would be better off pulling the plug, since she would definitely, 100%, need a feeding tube, a trach, would have CP, epilepsy, mental retardation. She would have such a bad quality of life that it wasn't worth it. She wasn't worth it.

I will never regret our decision to fight for Faiths life. Especially now, after reading the doctors letter, knowing that through "medical glasses" she is supposed to have spastic quadriplegia, yet deciding to look at her life through our "God glasses" and seeing this child who is whole!! We have no real diagnosis because she continues to stump the medical world. The closest we have come to a diagnosis is Global Development Delay, which I have learned now is the catchall diagnosis. Faith has defied all medical odds...

Which brings me back to the end of life topic. This person who I met, who suffered a brain stem stroke, can't talk, can't walk, can't eat - they are G-tube fed, can't do any of their own care. The only responses I have seen is laughing at certain dolls and smiling. So, the person is still there, but they are not really. Does that make sense? When I searched for brain stem stroke I kept seeing the phrase "locked in syndrome". The person is there, mentally - cognitively - intellectually, but they can't communicate any of their needs.

Is this what is referred to when the term "quality of life" is being thrown around? This person was young when the stroke originally occured - in their late 40's early 50's I believe. The situation really has me thinking about my mortality and how I would want to handle the same situation in my life?

Would I want life saving measures to keep me alive, but then I become locked in? How do we always know what the outcome is going to be? Like with Faith - there is no physical sign of spastic quadriplegia - but how are we to know that? How can you determine whether the quality of life you end up with isn't really quality?

Some really hard questions...we are not to play God - so do we turn down the life saving measures too? we are not to play God - so do we use the life saving measures until they don't work? This is my soul searching for the week...

Have you and if so, how did you, determine your end of life measures? Are you to be kept alive no matter what? Are you a DNR? If you are a Christian, then death isn't so scary, true? So, do we let nature take its course then?

I know, I am such a perky individual at this time in the morning!! LOL!! But these are real questions...and don't get me started on the will...I have 5 kids and still have NO IDEA where they would go if the worst case scenario were to happen!!

But that is another post altogether!!


  1. When I was pregnant with Z we were told we may need to consider this question when he was born. It is much much easier to say "termination is not an option" but quality of life? Oi! no black and white with that. Thank God we never had to go there.