Guidelines For the Removal of Feeding

 

The guidelines go as follow:

1.  Leave in the feeding-tube.

2.  Stop giving formula.

3.  Administer the maximum dose of pain meds possible.

 

Notice I say Feeding in the title and not Feeding Tube. The tube itself provides pain relief from hunger pains. I'd keep it.

I am writing this because I have a feeding tube and I know. I am/was vegetative. Also I write. So what if I was ruled unconscious? Maybe I was then, but I am not now. That's something that is being worked on. 

So notice that I left the word TUBE off. This was on purpose. People do not realize there is some pain protection in the feeding tube. Remove this device and you open the patient to a world of pain.

I'm talking about hunger pains. Sometimes they are called "pangs." It doesn't matter to me what you call them. They are not pleasant. 

Many have heard of gastric bypass surgery. A portion of the stomach is removed. Lesser known is Gastric Balloon. A balloon is inflated in the stomach with the intent of always making the patient feel full. (If you need weight loss surgery, talk to your doctor, and yes there is a feeding tube diet.)

The feeding tube also puts a balloon into the stomach. Nobody ever sees this part, but doctors and nurses know it is there. The feeding tube has an inner tube. (Some other devices do, too.) After it is inserted, the doctor or nurse inflates the unseen balloon usually with saline. Saline is the sterile water used. It has added salt and I believe it is supposed to match the water in the body.

I like this video because it shows the balloon.

This is pediatric, so mine is bigger.

The guidelines go as follow:

1.  Leave in the feeding-tube.
2.  Stop giving formula.

3.  Administer the maximum dose of pain meds possible.

First off is leave the tube in. There is a second inner hole that starts closing within a few hours of  feeding tube removal. There is no room for changing the mind. If the hole closes then surgery is needed allover again. If fortunately there is a bit of a hole, the doctor can use a medieval looking device. My tube came out once and I know. It wasn't pleasant.

Second is formula. Formula is what goes in the tube. Who started calling this stuff food? The stuff in the hospital has been unflavored and sometimes vanilla. It's a liquid diet. There is no solid food. At home, some supply companies have offered chocolate and strawberry. I currently take advantage of butter pecan. Long ago, a company got coffee flavored, but that was short-lived.

Last is pain meds. I don't want to know what is coming. OD me. I don't want to know. (Not knowing was BS for me. I'm still not supposed to know.)

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. 

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.

_________________

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.

________________

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 Are You?

I get "How are you doing today " First thing I do when I wake is check my feeding tube. If it is in, then I am ok. If my tube is out then you won't hear from me until I get it in and it is taped down. If I can't, it's ER.

"If I get it in"... Excuse me, but doctors have a hard time. Not only is there an outer hole,but an inner hole. I did it once. The GI specialist was shocked.

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 Need the Tube Out

 

"You have something protruding from your stomach," my daughter.

 

That's not what happened, but it's more exciting.      

                                            

I had been treating specific, mild pain  of my g-tube site. The G-Tube is where my feeding  tube goes into my stomach. 

The pain got worse. I ended up going to the hospital. Pain and redness warrant that.

Gauze was placed over the tube and an ambulance took me.

.

Under the gauze.

Redness  is infection.

They sent me back home!

I took an ambulance there and a  different "medical transport" took me back, without ever looking under the gauze.

Pus built up. The next day the feeding tube popped out. I told my daughter to push it in. I yelled.

When the G-Tube doctor opened an appointment was made.

The G-Tube was replaced and I am treating an unknown infection. 

_____________________

I can't take this anymore. I may not be conscious for the next infection.

About me- In 2002 I had a stroke. It robbed me of speech and movement. It has been years. I now type with one finger and speak enough to not be understood. I didn't used  to be a doctor or a nurse. I just know how.

I Knew

I had some experience with feeding tubes before I got mine. The experience came from the kids I saw.

I used to work in a care home. It was for developmentally disabled children that were beyond their medical needs but still required substantial care. There was one boy who was difficult to feed. He was about 9. When he was born, his umbilical cord was wrapped  around his neck. The delivering doctor was also drunk. 

While I was at this care home, this little boy had surgery to put in a feeding tube. Going by the rules, this boy had to leave the home. He was moved up a level of care. He would have to go to a facility requiring nursing licensure.

A year or two later I was a social worker for developmentally disabled children. I was a service coordinator. These kids usually got more than one service. Parents were overwhelmed... if the child was still with them. It was common for disabled children to be placed in care homes and institutions. 

I had to check on a little girl who was 4. She had a twin sister who was in preschool during my visit. The disabled twin was at home. When I saw her, she looked like a toddler. She wasn't walking and was in a large baby carrier. The biggest medical issue was that she was tube-fed. The mother showed me how it was done. She was confident and well-taught. She had no issues in meeting her child's needs.

It has been unusual to see a child with a feeding tube at home. That has been slowly changing. People aren't as scared of the device anymore. The feeding tube is like an IV but the feeding tube carries a nutritious formula, usually. This formula goes to the stomach. There are no blood vessels involved in the feeding process.

Changes and care is provided by a trained professional. This might be a family member, but in my case and many others, it is a doctor.

Part 2: Now What

I can see why that parent video showing how she changed her child's feeding tube was taken off. All parent videos are being replaced with medical videos made by medical professionals.

I was looking at a paper I wrote and noticed a video had been deleted. The essay is Overcoming the Stigma of a Feeding-Tube. This is Part 1. I present the issue.

 I thought that I will just replace that deleted video with another parent teaching parents video. I looked and they were all gone. Instead I found a medical professional teaching parents video.

This is how it should be. This also means the issue is recognized. I already mentioned in that article I wrote that wait times were horrible and there is a serious staffing shortage for on-going feeding tube care. Just because the issue is recognized doesn't mean that it is solved. It's just an official fact now.

_____________________________________________

I taste. I have a feeding tube, so people assume that I don't taste. To top it off, I have acid reflux. So, I'd get a feeding tube feeding, and then a bit later, the feeding formula would come back up. To make it worse, I taste the barf.

I get lollipops now. Things are much better.

For the person who can't have anything in their mouth, try flavored lip glosses and chapsticks.

Flavored lip balm is usually sold

for kids and has name brands all over them.

I wouldn't be surprised if tasting comes right before swallowing.

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.

I Swallow Enough for a Lollipop

"As a consequence of her brain injury, she was unable to swallow using conventional utensils, and like many Americans required nutrition and hydration by feeding tube in order to live."  https://www.lifenews.com/2019/03/29/14-years-after-they-starved-my-sister-to-death-we-must-never-forget-terri-schiavo/?fbclid=IwAR3J9S8A2Y14HpTt-XppmSMEGWlz1uXB4bFb45NpCA9FmwNTUsFv3ATjE2s

That statement could be me. I have a feeding tube. I quote Bobby Schindler. He's Talking about his sister, Terri Schiavo. She's no longer with us. Her feeding tube was taken. She was thought to have reached the end of progress.

The government cut off providing the formula for my feeding tube. So, through a medicare supplement insurance, I get my own formula and supplies. I pay for the supplement insurance and no one else does. I won't depend on the government for providing medical supplies. I don't trust them. They were going to let me die...all because I talk and don't swallow.

Now you find me with a lollipop in my mouth at most times.

 I get all kinds now.

I use lollipops to get my mouth used to having food in it again. It's been a very long time. It has been so long that some would say 'don't bother.' I say it's just lollipops. I'm not doing a whole feeding program.

Lollipops just aren't for kids anymore. Recently, a daughter gave me the following specialty lollipops,

Starting on the left, the first two are Pineapple Upside Down Cake. This is not standard fare. In the center is the jelly and the peanut butter of Peanut Butter and Jelly lollipop. This is a two-sided lollipop. Second in from the right is "The Bird is the Word" which is Fruit Loops, birthday cake, lemon curd and buttercream frosting. Finally, on the far right are two Canoli lollipops. Yes, there is now such a thing.

My next venture is a margarita lollipop. It's been so long since I had a margarita. 

Cince de Mayo - Classic Margarita Lollipops

_____________________

I once saw a speech therapist for a few visits. I was hoping to learn how to drink the formula in order to get rid of the feeding tube. The formula is now Ensure. So it tastes okay now. Swallowing my formula did not happen. I do not swallow enough.

The therapist thought I'd be able to do "pleasure eating."  I had never heard of the concept before, but I liked the sound of it. Now that I have lollipops I understand. Certain flavors give me pleasure.

I looked up the concept. Pleasure Eating has to do with Mindfulness thttps://www.bestfoodfacts.org/mind-your-meals/. I do know that heartburn has nearly stopped since adding lollipops. My digestive system may be working muscles I hadn't been using. I only notice one thing, though- I don't have barf in my mouth.

Patients Are Not Heavy

Two years ago, Medicare cut off the formula for my g-tube (feeding tube). I get by now with a Medicare supplement insurance through Blue Cross. They pay for my formula and supplies. The government does not. This was the Terri Schiavo issue. It wasn't about her feeding tube as much as the food. They (Florida) argued that they didn't have to feed her.

In these cases, know that "food" is a medically necessary formula. I also have a feeding tube.

Last year I sent a complaint to the UN. Taking away anything that is medically necessary becomes a violation and is a crime against humanity. The following, minus any comments, updates, and the song is what I sent.

Breaching Human Rights and Impeding Science

I write this despite being made vegetative after a severe brain injury. I also have a feeding tube. Obviously something scientific is going on. I can only assume my current status prevents investigation.

The United Nations is now involved. They can investigate. This is a global issue. Countries other than the United States look for direction. Medically providing nutrition constitutes feeding a person. Countries don't feed it's residents, but don't they provide basic healthcare?

 

 

Ill brothers and sisters aren't a burden.
I think we can feed them.
(By ill, I mean a feeding tube.)

Overcoming the Stigma of a Feeding-Tube

Updated 12/9/2019

More on that deleted video, https://thoughtfulveg.blogspot.com/2019/12/part-2-now-what.html



Updated 8/22/2019

How long can a person live with a feeding-tube? I don't know. I keep resetting the timeline.

The feeding-tube is so common to me that I don't even think about it. I get mine replaced at least once a year. Lately I have been doing twice a year as I have been using a new source for getting tubes. Every time I get a new feeding tube, the timeline resets.

"Since I am "aware", although my diagnosis says I'm not, I can replace my feeding-tube through my Medicare. My diagnosis is "Semi-Vegetative." That sounds different. I obviously talk now, so vegetative doesn't cut it. Doctors aren't sure what to call me." http://thoughtfulveg.blogspot.com/2018/08/tube-out.html
 
I have a Medicare supplement insurance to pay for the feeding-tubes and formula. Medicare and Medicaid don't cover the cost. Feeding-tubes and formula are a medical necessity for me. It is a medicare supplement so it has to be an approved cost. It also gets a Medicare discount. I still have to do quite a bit and an unconscious person would not be able to do coordination. I personally do not have money. I have other sources, but coordination and management must occur.

______________________________

People with family who have a feeding-tube are learning how to do the changes themselves. Usually it has been parents. Most parents will do anything for a small child. Gosh! I have seen videos.

There are very few doctors/nurses doing this. Wait times are horrible and a few hours can mean the stomach hole closing if the old tube is out (The hole inside that you can't see closes really fast. The hole outside remains.) Then you have to do surgery all over again.

I have a full-size tube, and once waited all day at the local hospital emergency room. I now carry an extra and last time I went to the hospital, I talked the doctor through the process of changing the tube. My hands are too shaky and I can't see when laying down. I can't do this myself. I have a local internist, but he was on vacation. My old tube was only held in place by tape, so I had to go to the ER.

The following video is a parent teaching other parents.

This is DIY. Parents are resorting to telling other parents. Doctors are so few they have to. They may not have anyone in their town.

[The video was deleted!]

 
I have a regular g-tube, or gastrostomy tube.

 A diagram of a feeding-tube.

The doctor will use the balloon port to inject saline that will inflate a balloon you can't see. This balloon holds the tube in place. If the balloon pops, then the tube can fall out. This is what happened when I went to the ER.

______________________________

"They call themselves "tubies" – people with certain medical conditions who accept long-term feeding tubes as the best or only way to nourish themselves. With the feeding tube in place, many resume school, work and social lives once threatened by severe weight loss and malnutrition. For them, getting a feeding tube means getting their active lives back.

Between 150,000 and 300,000 Americans have long-term feeding tubes, says Lisa Epp, a registered dietitian nutritionist with Mayo Clinic in Rochester, Minnesota. Not being able to swallow food because of cancer of the mouth or throat is a major contributor." US News and World Reports

I don't have cancer. I had a stroke which caused dysphagia, or the inability to swallow. The American government says I am vegetative because I don't swallow. I am still in a coma. That's what vegetative is, a coma. Rather than fixing the problem, it is categorize and file away. (Speech therapy does swallowing.) I still feel this category is discrimination. The rest of me isn't in a coma.

Tube Out

It disturbed quite a few people (that's how many it appeared to me) that a young woman had her feeding-tube removed. She subsequently died.

Through misfortune, I ended up vegetative with a feeding-tube, but later, with good fortune, I can have my feeding-tube removed and report back to those people and others. I am not totally without a tube, now. I just have a new one.

This video above just shows taking out a feeding-tube. It doesn't show another tube being inserted.

After the old tube is out, a new one is put in, in my case anyway. For a lot, once it's out, that's it. When I was in the hospital, I had the same tube for years. (I was in various hospitals 4 years.)

"Healing" for me when replacing my tube is swelling and leaking. After a few days that stops. All resumes as normal.

Since I am "aware", although my diagnosis says I'm not, I can replace my feeding-tube through my Medicare. My diagnosis is "Semi-Vegetative." That sounds different. I obviously talk now, so vegetative doesn't cut it. Doctors aren't sure what to call me.

There's no starving here. I may not be able to do a lot, but I can direct my care. It's good fortune that I tell you.

________________________________________

Now remember how I said that it appeared to me that quite a few people were disturbed by what happened to this other woman? I've recently been adding quite a few to one social media site. (I belong to a few different Social Media programs, so look.) The following video was sent to me. I immediately thought of the woman who passed away.

Thank you congregation.
This video did not have any identifiers.

To the people who were bothered by that other outcome, the same thing didn't happen here. Nothing here is the same.