Feeding Tube Awareness Week: How To Prepare A Feed
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- čas přidán 27. 08. 2024
- Feeding Tube Awareness Week 2017 takes place February 6th through the 10th! This is a glimpse of what tubies must do to prepare a feed. Check out my latest blog post for an in depth explanation about various types of feeding tubes.
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Never know when or where you'll see an all star in action. Well, surprise. We have an all star. Great Job!!!
I had a feeding tube in me 21- nearly 22- years ago... i was born premature, and i still have the scar where the tube was. i had to learn how to eat real food around 2 or 3 years old. i used to gag on a cheerio and it took me 10 minutes to eat it. i'm glad i can eat normally now. i'm learning not to eat certain foods still, due to allergys. #feedingtubeawareness #staystrong
I’m learning so much about a disease that I never even knew existed. Your videos are really funny the editing etc. etc. I am impressed.
Awwww hun. Sorry you have to go through this but you are so brave making a video to share awareness. Lots of love.
Thank you for making this for feeding tube awareness week! I also have a feeding tube, but would never be brave enough to post a video on CZcams.
Aw, you are so sweet! Thank you. Never feel ashamed of something that keeps you alive. Rock it!
At the part where your warning about the cap flying across the room, you could do what Peter Frey does it just watch it pop off and fly. Haha loved that video part. I also do that when I do feeding tube prep
Aspie_zebra.Bro4life omg😱someone else from the Frey life!!! Hi!! 👋
Shira Weiss hi!!! 👋
Frey Life fans should be call Fries ...
My little sister, she's two, has a feed tube. She's had one since she was 8 weeks old.
wonderful to see older person as a tubie! our son began tube feeding 1wk before 18 last April. same pump and different formula. Continuous feed @ 72ml in J tube
Amazing,take care. Avoid it from infection
Omg honey .. my 2 years old son will be in a GE tube like yours soon and your video helped me alot
hope you don't mind me asking but do you feel anything when it goes into your body.and how do u sleep with it the blue part I
mean does
it hurt if u accidentally move into your stomach during sleep xxx ☺
I have a feeding tube is don't feed like that but it,s for something els I use to have one I still do thoe
Jenna Hagie I have been foaming I drink liquids and foaming spitting
Love! I have had an NJ feeding tube for a bit over 14 weeks now. Because I am getting all my nutrition and hydration soley though the tube I have Feed and Flush bags (1000 mls each bag that are seperate and feed into one line that connects to me). For me when i was first started on feed rate and keeping up with hydration (ahen I was admitted in the beginning of january it was for dehydration due to GP flare where I had eaten and drinken very little over 4 days and what inhad was profusely vomited up; i had not peed in 36 hrs and all my major nutrients and electrolytes were plummeting; so as we were playing around with rate I kept getting dehydrated because I was very dehydration to begin with) was a big issues and eventually we had to switch to a higher calorie formula (osmolite 1.5) in order to compensate for the decreased rate (original goal was 80 mls 24 hrs a day and taking in 700-800 mls of water/fluids orally but once we realized i couldn't do that orally and my intestines could handle that rate we started doing feed and flush bags at 65 mls/hr 20 hrs a day and 40 ml flushes each hr 24 hrs a day). The one thing that sucks is that I have to use a kangaroo joey because of the feed and flush and big bags only for the same reason.
I always kind of loved the idea of the feed and flush bags! I wish they infinity pump offered them. I usually just pause my feed and flush manually with a syringe. However, I do IV hydration so flushing frequently to receive sufficient hydration is not as important as it used to be.
It is way more convient especially when you need more hydration and you don't have to remember to flush the tube either which is nice. Apparently they are hard to get covered by insurance unless you have a specific diagnosis like GP and have a J tube, GJ, or NJ. I highly reccomend them even if it means changing to the kangaroo joey pump, yes a bit bulkier but if you are an adult I don't find it heavy at all and the priming mechanism is wayyy faster
She’s so cute ❤god bless her.
So sorry to hear this lovely girl has passed away
Funny story My cousin had a baby...(i would explain it but its a long story) BUT he ended up with a G Tube ... His name is Aiden and the exact day that she brought him home i wanted to learn how to do EVERYTHING!!!!!.... I learned in 3 days how to feed him attach him and how to prime it to make sure there wasnt any bubbles because he was a newborn ... while you were talking i was basically saying every single thing you were talking about LOLZ!
Love the video! Love the shirt! Love the room! 😘❤❤❤
Thank you. 😘 I like to think that the storage cubes in the background hide all of the medical equipment well, hahaha!
Christina Doherty i
My 9 month old has this and we are trying to figure out how to use it before the nurse teaches us. THANK YOU. 😉
As soon as I heard Lydia I subscribed!
I am a new subscriber!! i was wondering why you have a feeding tube. love your videos girl!
Thank you! I have my tube for multiple reasons, but primarily because of Mast Cell Disease. Mast cells are immune cells often known as allergy cells. My body has too many of them throughout my Gastrointestinal tract and they tend to "misbehave," so to speak. They get triggered easily, resulting in random anaphylactic reactions without the presence of a true allergen. To reduce the reactions, I use the tube to bypass a portion of the GI tract to run a special hypoallergenic formula with ingredients so broken down that the body is unable to recognize them as allergens. However, because Mast Cell Disease is a cellular problem rather than a true allergy, I still have reactions to the formula. They are just milder than consuming actual food. I also use the tube because Ehlers Danlos Syndrome has caused a malfunction in my autonomic nervous system, which makes my stomach motility to become sluggish, or partially paralyzed. As these conditions wax and wane I intermittently go from tube fed, eating orally, and TPN (IV nutrition) - or any combo of the three. :)
Thank-you for doing this video my Baby Brother is going on the G-Tube.
So nice of you to make this video. My Mom has lost the ability to swallow (dysphagia) and is losing weight quickly. Next step a Feeding Tube which scares her. I wish she could watch you but she also can't see very well at all. I feel much better about it and feel this is what we need to do. Was the procedure outpatient or did you stay in the hospital a few days? Have you ever had infection?
Ginger Llewallyn ive had one because i was a preme (now 24) but i can answer that hospital stays not a lot but they do need to properly teach you how to clean it and what happens if it gets infections and also since the pumps changed since i was a kid theyll teach you how to read the monitor most of the feeds are done at night to ensure enough nutrirents enter the body and no i have never had an infection but i did pull my out often the hole closes on its own...make sure you twist it like a nose piercing....
Thank you for sharing. May Alla bless you.
You're my little sister. God bless you...👍❤️😢
Love the video, Awesome lighting
My little sister has this but in her nose she's getting it in her stomach soon though 💗
I stumbled upon your channel! By the way your super pretty!
Thank you!
i used to have one
You are really pretty ^-^
Aw, you are sweet.. Thank you!
Cheyanne Perry that how I eat too
for mine I just do what u did accept I have a bigger bag and fill the whole thing up and start it at 8:00pm and go to bed and take it out when I'm donr
Hope this isn't mean but...
Do you eat anything with your mouth?
And do you feel/ taste anything?
sorry is these questions hurt you ❤❤❤❤❤
Good video , I've never seen a Micky button like that before :)
hey fellow tubie, I have an idea for you. to make tube feeding a lot more fun,,, put food coloring in your formula any color you want shake and you have colorful formula.
wait I'm new to this I don't know much about it so is that all your able to eat ?😊
At the moment, yes!
Cheyanne Perry Sorry if I'm rude, but why? Xx
Problems concerning the pathways of food from mouth to inner body (stomach) such as those that occur in the esophagus (cancer) , oral surgery (in which you cannot ingest food, temporarily) , etc. This process is called Percutaneous Endoscopic Gastrostomy (PEG)
@0:35
I like how you did that
Good video 😊
Thank you!
Love the video! Keep strong girl!
why do you have a feeding tube?
How many times a day do you have to set up a feed? Great video. I didn't know you could have access to G and J. That must be helpful.
It is incredibly helpful! I set up a feed anywhere from 2 to 4 x a day depending on how much I fill up the bag each time.
I was tube fed too ❤❤
People always say I have two belly buttons because of the scar😂
Beautyflip ! Omg mee toooo
❤ my all prayers for you.🌹
I used to have the same thing as u but I got mine g tube out when I was 6 years old and now I'm 17
I prime at least partway by hand with the bag upside down so the air gets out...really cuts down on my pump beeping.
You are so brave
why do you have a feeding tube just asking?
Do you use a new bag for each time you make formula?
One bag every 24 hours!
You are very brave
What do you do with the syringe?
The syringe is to flush the tube. It is also good for measuring if needed. xx
تمسّك بالأمل .. مهما كان حلمك مستحيل !
واهمس لقلبك ؛ إنّ الله على كلّ شيء قدير 😘😘
الحياة اصبحت متعبة ومرهقة لدي
Number one you're extremely strong number two what's your diagnoses and how long of you been diagnosed
Well done
You very strong girl
How did it feel once it was in the did time I currently have an NG tube but my doctors are thinking about a G tube
U R AMAZING..THANK YOU
why do you have a feeding tube
I hope u don't mind me asking but why do u need the tube ^^ ur so pretty 😊
I have the same bedding as you
I have had a feeding tube for 1 and a half years and had no idea that there is a Feeding Tube Awareness Week! Did I get a t-shirt? That would be NO. I am bummed.
Your so sweet and pretty. Thinks for the inspiration
I'm just wondering? Why do you need a tube, and literally my cousin has one but she's very disabled. So I'm just wondering why you need it😘. And your VERY pretty
I never knew that people eat throw a tube and your really pretty
Why can't you eat??
Amy Carter Me too just wants to know..? for notification...
Problems concerning the pathways of food from mouth to inner body (stomach) such as those that occur in the esophagus (cancer) , oral surgery (in which you cannot ingest food, temporarily) , etc. This process is called Percutaneous Endoscopic Gastrostomy (PEG)
Something about that locking mechanism with the blue band irritates me. I feel like it’s one of these things it’s over engineered/contrived just so a company could have some weird patent on it, kind of like all these “sophisticated delivery systems“ which are really just fancy nasal spray bottles or whatever. I don’t know why it just bothered me… weird no? Do you feel me on this? lol
may i ask why you have a feeding tube I do not know much about them and i see parents or people post about them and i wanna ask why. But I feel like they would get upset if i ask them ....
ok my name is Cheyenne and someone in my classes name is Sheyenne Perry.
I used to have a feeding tube
converse 9694 me too
I hated having on I got it out when kids was 4
My friend have a tube. I was just curious
pls tell me the name of the GJ tube
@0:18
I like your t-shirt where did you gat it
Can you drink water?
where u get the shirt
How long it's taking you to gain weight?
feeding tubes very good and bad
How old are you if you don't mind me asking ?
5/100
does ut hurt when you insert the tube? And what dies the formula smell like? I automatically assume it would smell like a baby's formula lol
The initial tube surgery is painful. That is expected after cutting through the abdominal muscles. After the first surgery, getting the tubes changed out every few months is not that bad. It is uncomfortable more than anything, but very short lived. The formula smell depends on the type. I have no clue how I would describe mine. The formula called Neocate smells like vinegar though, hahaha!
Cheyanne Perry lol thank you, and eeeeeew lol
Angel Price I have a different formula and mine smells like sour potatoes, tastes like Miracle Whip, and leaves my backpack smelling like French Fries.
Why was this in my recommended box
Hi
Can you eat normal food ?
How old are you ?
your very beautiful , but I have a question why do you need to eat out of a tube? not trying to be rude or be in your business I'm sorry if I offended u
why!!you're so pretty damn
👍Beautiful
can you taste it
Nope!
🌹❤️
you are really pretty^-^
Yummy!!!!
love you. nice girld
3:01 thank me later
Freek ha ha
Are you a teenager
Am I crazy to want a feeding tube even though I have no medical conditions? No cooking and more nutrition since I do not have to taste the food. I cannot be the only person who has thought of this??
i feel the same way. ive wanted one for awhile because the medications i take make me not hungry
yes you are both crazy and insanly disrespectful. "so you dont have to taste the food" really?! some people would do anything to not have these but you think it will be cool cause its convenient!
Yes you are crazy and like Kimberley said, insanely disrespectful. For people who have these feeding tubes due to genuine medical conditions, they'd give anything to just be able to be "normal" and healthy. Have some respect for those who suffer medical conditions.
KiloHeathen I know why you'd want one, and don't feel disrespectful, some people with them dislike them a lot, point given, but it's ok to want to try things that seem interesting or solve a mundane task. But the truth is, they are still a lot of hassle and although food might be boring to make, we wouldn't make it taste the way we do if we didn't like flavour.
It is very disrespectful actually. Life is a gift and you should not take your life for granted. Ill individuals would give anything to be healthy and have their life back. I am sure they'd gladly give their illness/condition to KiloHeathen if they could just so he can have a feeding tube because he feels cooking is a hassle, etc. Think before you say stupid things. If you are healthy and have no medical conditions, be grateful. Stop bitching about life and mundane tasks you take for granted that other people wish they could do. If cooking food and not having to taste food is the worst of your problems then you're so fucking lucky. Be grateful you do not need a feeding tube.
you're gorgeous!
Thanks
🌺🌸🌹😘😘😘
You are soooo cute 😘
It's ok top say "milliliters" instead of "M Ls".
Why I. The name of hell is this on my recommended
Feeding tubes suck really bad
You're very beautiful
whats wrong with you
somersks Fuck you
Why can't you eat like normal people??