Monday, January 11, 2021

I'm Not Dying For a Drink

Re:  Dying For a Drink


Once upon a time...


.

A person in a coma has to be fed. They don't wake up  to eat and then go back to sleep. These people are usually fitted with a feeding tube, and the giving of nutrition becomes a medical aspect of their care. 

FEEDING TUBES ARE MEDICAL!

Formula is used for nutrition. The "drink" is this formula. Patients don't drink it at all. Rather, it is personally delivered by a  feeding-tube. A person dies without food. The formula has all the nutrients of food. If given the formula, a patient who cannot eat will live, usually. Other medical problems may occur, but feeding tubes are meant to avoid starvation.


My formula happens to be Ensure. It is sold at the local grocery store. In an emergency I could get some. The containers look different on the outside, but that is marketing. I get the wholesale medical cartons from a supplier, not the fancy bottles sold in stores. Marketing now has all kinds and flavors, but I take the good, ol' original. Going back in history, it may have been the original formula.


If I purchase, then I try to find coffee flavored.
I bought this on-line.


"Bleh," is all I can say about the unflavored formula given at one hospital. I get "You can taste?" Yes, I can taste, and tasting unflavored feeding placed directly in the stomach is not instant. I have reflux. I'll instantly taste it if it comes back up. It's usually vomit by then. Tasting unflavored formula and barf is not pleasant.

Recently I saw a science video talking about holes in the body. I guess if you rub a raw, cut clove of garlic on the sole of your foot, you taste garlic an hour later. In the same way, give me coffee flavor Ensure and I taste  cheesecake an hour later. I assume digestion has something to do with the flavor.


I use a feeding pole.


The formula has to make it's way into the body. This is how it becomes a medical procedure

The feeding tube is a port into the body through the stomach. Likewise, an IV is a port into the body through a vein. There also is special tubing and usually a bag to hold the substance. These are medical supplies and not food.

Sometimes there is a pump. I do not have one. I have a Feeding/IV Pole, and natural gravity becomes the driving force of moving the formula. 

Learning to Taste

My favorite flavor was Butter Cream Frosting. I believe it was this brand, and I doubt they still make it. This picture was on E-Bay and the product is probably discontinued.

During 2003-2006, while still in the hospital, I taught myself how to taste. How you ask? I used the flavored lip-glosses and lip-balms for children. I had a ton. I couldn't eat. I'd put on a flavor when I had a tube-feeding.

Applying and opening/closing lip balm became Occupational Therapy. I was careful to remove lids over my lap. Retrieving a lid that rolls under something could be impossible.
_________________


I know how important the feeding-tube is for survival. 

1-10-2021 
I watch my feeding-tube like a hawk. I got it 18 yrs ago. I should have died 18 yrs ago. It kept me alive for 2 years while waiting for life-saving surgery. I breath on my own; I speak on my own; and I now write on my own. That feeding-tube has  kept me alive. (It's not the same tube. I periodically have it changed to prolong life.)  





I know how to temporarily reinsert the tube until medical care arrives. I know how to provide daily care to keep it maintained. A person in a coma can not coordinate their care. A service coordinator is needed. Emergency services can be provided by a nurse.


There is a difference between food/formula and  medical supplies. A conscious, aware person, with knowledge can serve as coordinator.




The lollipop thing I do is something I dreamed up all by myself. I'll need to explain, or me eating anything will look like a miracle. I used to provide early intervention and I also did the job of disabled services coordinator. The lollipop training I do comes from these experiences.

My formula and feeding supplies were once cut off by the government. They required a swallowing evaluation.

I thought that if I could only swallow the formula, then I wouldn't need any supplies. Then I thought, "I can do that, sort of." When I did Early Intervention a few kids had eating problems. I'd use my experience.
________________

I haven't had food in a long time. Lollipops are used in a patient that can handle their saliva but cannot swallow food. This is why I use lollipops. The goal is only formula intake.

Swallowing would be an outcome. This now happens to be the issue that determines me being vegetative. We'll see what happens.

I have somewhat of a swallow now, but nothing that would pass a test. It needs to be stronger and more consistent. I continue with lollipops.

If you say it's slow...









1 comment:

  1. I'm honoured that you have presumably named this blog post "I'm Not Dying For a Drink" after my blog post of mine on Christmas Day, about a patient RS, entitled "Dying for a drink",
    https://johnallmanuk.wordpress.com/2020/12/25/dying-for-a-drink/
    in which I honoured you and promoted this blog, and linked to an earlier blog post of mine in honour of Scott Routley, entitled "Talk to me, don't just starve me to death", to which you had kindly contributed mopre than one comment, if I remember correctly.

    Thank you for educating me and your other readers about your diet, in which (if I understand you correctly) the distinction between nutritition and hydration, i.e. eating and drinking, is somewhat blurred; or, to put it another way, the two birds are killed with one stone, through your feeding tube.

    There is a reference in the bible to manna, saying that humans "ate the food of angels". It appears that you eat and drink the integrated food and drink that it was once envisaged astronauts would live on during missions. It is to your credit that you don't complain about your life, but simply report it as it is.

    Happy new year. Keep blogging and tweeting. I shall continue to encourage others to visit your blog and to follow you on Twitter. If I was unlucky enough to awake from a stroke or an accident, having suffered brain damage, and awoke from a deep coma into an open-eyed coma in which I was at first unable to communicate at all (a problem you once had I believe), and in which I couldn't swallow food and drink and needed a feeding tube (a problem you still have to live with - pray God you recover that ability), I hope I'd be able to remember your blog posts, to give me hope and courage.

    ReplyDelete