I'm Not Dying For a Drink

Re:  Dying For a Drink

Once upon a time...

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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. 

There Is No Pump!

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.

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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.)  

https://thoughtfulveg.blogspot.com/2020/12/how-are-you.html

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.

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https://www.medicinenet.com/oral_aversion/definition.htm

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...

How I Got Out... and Survived

I just did it, but there was planning first. I left the hospital and all medical facilities. It is called Independent Living. The movement has really taken off during my generation. The generation before me laid the foundation. This is considered Disability Rights, of the Civil Rights Movement. 

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Make sure there is a roof over-head. A patient doesn't just leave a facility, usually. I'm not getting into Against Medical Advice as I didn't go that way. Most of the time, I was transferred. There was always another facility.

When I went "home", I kept with this. The house already had to exist. I didn't directly come to this house. I had a rental across town for about 6 months through a friend of my mother. This rental was planned for at least 2 months in advance.

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Next was the equipment. A medically involved person gets by, maybe even exists, with equipment. Get to know your hospital social worker. This person will be ordering what will be needed for daily living.

In my case I needed:  a hospital bed, a commode chair, and a bath bench.

Over time the bath bench had changed to a shower chair. An in-bed hair wash sink has been added. Also, a bedpan was purchased. Through a fund-raiser, a standing lift has also been obtained.

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My food is a commercially prepared formula. At that time when I came home, my formula was Boost. I remembered that the rehab hospital used this preparation. The hospital I was leaving used an unflavored formula that I didn't like. I have Ensure now. This can be bought at the store in an emergency.

When I moved, I set up with a medical food supplier in my state that I already knew of. The hospital had provided me with a couple of large containers of the unflavored formula. My mother went to the store and purchased Boost. Store bought and the medical preparation are the same.

I currently use Ensure formula. 

This is the same as bottles sold in the store.

I said I already knew which medical supply service to use. Years before my stroke I was a service coordinator for disabled children. This included the medically fragile child that the parent wanted at home. I would need the same kind of services.

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Early on I learned that I had to be able to verbally describe my care to a complete stranger. I went to a carehome in Northridge, California. The Northridge Earthquake was devastating and famous. I was with the survivors. I would take this bit of knowledge they gave me further and give instruction on entire nursing procedures.  https://braininjuryknow.blogspot.com/2016/03/streetsmart-in-wheelchair.html

This city was made famous by an earthquake.

'Who will take care of you?' is a big question, but I minimalized it. Almost anyone could do it. I believe the youngest was 12-my older daughter years ago. 

I am in California. I know a lot of the programs in this state. I knew of a program that provided caregivers. I use In-Home Support Services through tthe California Department of Social Services.

https://www.cdss.ca.gov/in-home-supportive-services

They could do basic care. I'd direct the rest.

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This is how I do it. The knowledge is all in my head. I just relate to a person how to perform a procedure.

There Is No Pump!

I receive feeding/formula in bed 

and sometimes in a wheelchair.

I have gravity feeding through a feeding tube. This means there is no pump. Should I explain gravity? It's a force that pulls you down. If it wasn't there, you would be floating.

A formula is hung up on a feeding pole. This pole is also an IV pole. Gravity pulls the fluid down. Feeding is given like IV medication.

The formula I get is also a popular nutrition drink found at most neighborhood grocery stores. It is easily found. It is pleasant tasting to the general public. It is no wonder that this particular formula would be chosen for someone who has reflux. Who wants to taste formula with barf?

It's pretty easy to adapt the feeding tube for independent living. These changes should occur under medical supervision. Mine did.