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.

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, Then What?

In Dec 2016 and Jan 2017, the govt cut off my food until I had a swallow study done. There was probably no thinking at all. It would have been done as a paperwork issue. In reality, it was reminiscent of Terri Schiavo days. How long can she go without food?

Fortunately, my daughter had been stock-piling food in case we had a Zombie Apocalypse. Who knew the govt was going to be a zombie?

I had made some YouTube videos where I was speaking. If you look though, I do not speak a majority of the time. Maybe this got them thinking that I was back as I used to be. https://www.youtube.com/channel/UCBvLu17OOm0zXTRB_FKf1SQ

Well, I didn't swallow for that test. It recently hit me that this was a good thing. What would they have done if I had swallowed? Would they have just cut my food off altogether and just left this tube in my stomach?

I am assuming that the tube just can't be left. As it is now, I have to see the GI Specialist every 6 months or sooner to have the tube replaced. It is held in place by a balloon filled with saline that can burst. It has. This is why I say sooner.

The tube can be taken out, but surgery has to close the hole. I just can't be left with a hole in my stomach.

When I did early intervention, there was a boy about 3 years old who still used a bottle to get his nutrition he was developmentally delayed. (I remembered the foster mother being told to use lollipops. This is where I get lollipops from.)

Years earlier while doing my MA, I worked in a group home for developmentally disabled children. There was a boy, around 15, who was learning to scoop and eat his own breakfast cereal. He could have easily been that 3-year-old boy. There's quite a few years from age 3 to age 15. I don't think eating comes so fast after swallowing.

I don't think my feeding tube can be instantly stopped. The plan of action should go something like the following and it can take years if need be:

1. Establish The Swallow (I do periodically swallow throughout the day, but it is not controlled.)

2. Slowly Switch To Drinking the Formula (A flavored formula is used.)

3. Remove the G-tube

It's been some years, but I attended only one feeding clinic session at a hospital as a social worker. I do remember something like this required coordination between professional, medical, and daily programming staff. A single entity could not make the decision.

I don't need any zombies. This can be a planned, coordinated thing.

Why Wait So Long?

 Tue, January 3, 2012 8:43:22 AM

RE: back home from the hospital

From:
To:	Angela Ronson <angelar70@att.net>

---

No feeding tube would be great.  I agree with you.  Why wait so long?  I guess again you are the only 1 out there that has made this type of progress. 

From: Angela Ronson [mailto:angelar70@att.net]
Sent: Thursday, December 29, 2011 7:17 AM
To:

Subject: Re: back home from the hospital

Why did they wait so long? If there wasn't any problems it'd be never? The speech therapist said this shoulda happened 6 yrs ago

-----------------------------------------------------

I was hospitalized with an infection of my g-tube. Before I was discharged, I met with a speech therapist. I told him that I took some food and drink by mouth, but not enough for nutrition. His goal: increase that so I don't need a feeding tube.

No feeding tube = no infection.