Thank you for putting this up! I just got a feeding tube and had my home health nurse set up everything here at home, but it's so hard to drag the IV pole everywhere so I'm feel like I'm stuck! I bought a small backpack specifically for this, can't wait to get it set up so I can be a bit more mobile... Thank you again for sharing! I have the kangaroo pump too lol.
For the q&a could you talk more about your custom wheelchair? You only made that one super shot video showing it. What kind is it? When do you use it? What was it like adjusting to becoming a wheelchair user? Any positive/negative reactions?
What a great idea for your backpack. My son is tubefed and i got him a backpack that was designed for his pump that cost $160. I will look into doing something like yours in the future when he needs a replacement
Finally deciding to start using one that’s not the big bulky one that comes with the pump and bags the first time. Thanks for this video! Love watching everyone’s ideas!
I realize this video is from last year....but I was curious what formula you had trouble with it being too thick? I have had an NJ tube for 2 months with the same issue. I started with Kate Farms and didn't tolerate that, and am now on Liquid Hope pureed. My tube is an 8 french; so we run it for a few minutes through the Vitamix and I haven't had any issue since with tube clogs other than if my feed is running at a super slow rate-I have some clogs that are easily broken up with a syringe push of warm water. Thanks!
Do they think your feeding tube will just be temporary? I had an NJ for 7 months and just got rid of it two weeks ago due to severe throat irritation and sinus/nose irritation and also because I couldn't keep it down. I have been TPN dependent for 10 weeks now because after my pyloroplasty I stopped tolerating feeds. Many of my doctors at home were encouraging a GJ tube and ileostomy but there was some resistance from my parents so I got a second opinion from a motility clinic and she said I really need a GJ as soon as possible to try and get me off the TPN and down the line maybe an ileostomy, she said start with the GJ tube. So I am finally seriously pursuing this tube and figuring out how soon it can get done.
Is your name Hope or is it like your motto? (saw it on the end slate picture) Sorry if its a weird question lol you don't have to answer if you wanna keep it private lol
Hope is my motto. No matter what is going on I try to always remember that there is always hope. So i put it everywhere to remind me. I have a bracelets, shirts, pictures, basically anywhere I can.
Thank you for putting this up! I just got a feeding tube and had my home health nurse set up everything here at home, but it's so hard to drag the IV pole everywhere so I'm feel like I'm stuck! I bought a small backpack specifically for this, can't wait to get it set up so I can be a bit more mobile... Thank you again for sharing! I have the kangaroo pump too lol.
Your home health dme can order you one
For the q&a could you talk more about your custom wheelchair? You only made that one super shot video showing it. What kind is it? When do you use it? What was it like adjusting to becoming a wheelchair user? Any positive/negative reactions?
What a great idea for your backpack. My son is tubefed and i got him a backpack that was designed for his pump that cost $160. I will look into doing something like yours in the future when he needs a replacement
Ebay has the TJ-1000 kangaroo joey backpacks NEW for affordable prices!
Finally deciding to start using one that’s not the big bulky one that comes with the pump and bags the first time. Thanks for this video! Love watching everyone’s ideas!
I love you you inspire me to be a better person
I realize this video is from last year....but I was curious what formula you had trouble with it being too thick? I have had an NJ tube for 2 months with the same issue. I started with Kate Farms and didn't tolerate that, and am now on Liquid Hope pureed. My tube is an 8 french; so we run it for a few minutes through the Vitamix and I haven't had any issue since with tube clogs other than if my feed is running at a super slow rate-I have some clogs that are easily broken up with a syringe push of warm water. Thanks!
Do they think your feeding tube will just be temporary? I had an NJ for 7 months and just got rid of it two weeks ago due to severe throat irritation and sinus/nose irritation and also because I couldn't keep it down. I have been TPN dependent for 10 weeks now because after my pyloroplasty I stopped tolerating feeds. Many of my doctors at home were encouraging a GJ tube and ileostomy but there was some resistance from my parents so I got a second opinion from a motility clinic and she said I really need a GJ as soon as possible to try and get me off the TPN and down the line maybe an ileostomy, she said start with the GJ tube. So I am finally seriously pursuing this tube and figuring out how soon it can get done.
I have the tube 24/7 had it in for about 2 months now and still got a long way too go
How do your bags not get stopped by the bend in the tube at the bottom?
Me encantan tus videos.
Will you have to use a feeding tube for life or how long? Just curious! You’re a trooper!
You have to learn a lot.
What are you using to secure the tube to your face in this video please?
Perfect going to do this to my slings thank you
I'm on Kate Farms too but I drink it
Why do you need a feeding tube?
Is your name Hope or is it like your motto? (saw it on the end slate picture) Sorry if its a weird question lol you don't have to answer if you wanna keep it private lol
Hope is my motto. No matter what is going on I try to always remember that there is always hope. So i put it everywhere to remind me. I have a bracelets, shirts, pictures, basically anywhere I can.
Are you on Jevity? That's what I'm on and mine is too thick as well, I want to switch formulas so bad!
Brooklynn B I was actually on Liquid Hope, but now I am on Kate Farms and it is MUCH better!
My baby sister have a feeding tube
What does it taste like
You’re a magnificent beautiful woman .