Wednesday, April 29, 2020

When Did You Come Out of the Coma?

7/5/2020 (after the post)
A nurse from a state contracted nursing agency asked me when did I come out of the coma. This did not change my diagnosis. It still says that I am in a coma.



Initially, I couldn't understand why I was in a coma. Now, I think it's hilarious. The policy is wrong. I'm now asked. This is even funnier now that I am asked. You tell me when I came out of a coma.



I'll illustrate why I am in a coma. I grew up being told that the brain doesn't heal and regenerate. I was told that a person was born with a certain amount of brain cells. Drink a beer and they were gone. So you shouldn't drink alcohol.

My brain bleed killed lots of cells. It killed so many that my initial report says that I am brain dead. Going with that belief that the brain doesn't replace cells would mean that I am still the same- I am brain dead and in a coma.

Since the government goes by this policy and they are my primary, my paperwork has not changed. I'm still in a coma on paperwork.
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I came out of a coma I believe in mid-January 2003.  I opened one eye. I couldn't move. I couldn't speak. I was made vegetative, PVS.

PVS, or Persistent Vegetative State, is just a continuation of the original coma but the eyes are now open. I'm still in this open-eye coma. I may have opened my eyes, but  the coma remains. 

Written documentation must have stopped because I have remained this same way on paper for years. PVS is close to death. Documenters must think I am dead now.

I'm not dead.



I've taken this time to get better...on my own. I am not in a hospital. (So far, it has been 14 years out of a hospital. At this point, one must think that I have magic powers. I don't have those powers. I've had years of training and experience in community care. That's not magic.)

To the initial question, I am still in a coma as far as I know.


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The following shows a Swallow Study.


had an initial swallow study 17 years ago. It went like the video, but my memories are more feelings than  procedure. (This shows brain development. I did not have the capacity to remember procedure.)

Alas, I did not have the capacity to swallow, either. I was instructed to tell nurses that I was NPO. I didn't know what this stood for. I think it's Latin, but I made up "Not Per Oral."

A few years ago my feeding supplies were cut off. I got a feeling that it was due to pure bureaucracy. A doctor wouldn't stop tube feeding, but a bureaucrat would. Somebody thought I was all better, or dead.



In order to get the feeding tube supplies turned back on I was scheduled for a swallow study at my local hospital. A Speech Therapist wasn't  ordered. A doctor wouldn't have missed this. A bureaucrat would.

The hospital Speech Therapist stepped in. He did the test. I heard him say something, though. "She closes her airway." He wouldn't know that I didn't 17 years ago. The interventionist in me jumped in (I used to do infant intervention). "Can I have lollipops?"  

Lollipops are a speech therapist's tool to teach swallowing in young children. That's how I was approved for lollipops. I've since found a few things on-line for adults and lollipops.

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I don't know what swallowing has to do with consciousness, but I doubt that I am not "Not Conscious" anymore. Since I didn't swallow, though, I am still in a coma.







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