I honestly don't know how I found your videos. I think one just appeared in my reccomended box one day. Its so cool to see someone young dealing with this stuff well and being positive about it. I don't know what its like to deal with a chronic physical illness ( I have severe depression but thats probably easier to deal with) but I'm so impressed and inspired by you
Agreed - she is very mature, great at explaining things, and has a great attitude. I think her video was recommended to me from watching the Frey Life (blindfolded feeding tube challenge) and I just really enjoy her videos! I struggle with depression and anxiety myself and can't imagine how difficult it would be to have a physical illness, but everyone has different ways of dealing with things.
glad everything went well! i had one of those giant tubes (i have NO idea what they are called because i was 8 at the time so i don't remember lol but it was even bigger then yours) but anyways when they switched it out for a smaller one (my gtube is called "mini one" and i still have it, obviously i've switched them out a few times because they get old but i've kept the same brand) but they took it out while i was awake! the dr literally pulled it out of my stomach and i remember it was SO painful. you are so lucky you were asleep haha. i have cystic fibrosis btw and i love being able to watch other people with chronic illnesses because it reminds me that there are people out there who understand! love your vids so much, keep it up and keep fighting girl :)
I used to have a Mickey button when I was a baby. I was born unable to swallow because my nerves were underdeveloped in my face and neck. When I was a toddler, my dad took me to shock therapy where they would shock my nerves in my face and neck to stimulate growth. When I was 3, it finally worked!! I was able to swallow for the first time. But some of my nerves are still paralyzed forever on my face so I’m unable to blink and look around properly as well as smile or make facial expressions.
Why wouldn’t they go back to an NJ if they couldn’t place another GJ, so that way you wouldn’t have to deal with pain and discomfort from G-Tube feeds; or if worst came to worst, TPN through your port? Love your channel!
Hi i love your videos I have watched them all and I love your family I have a ? What do you do with your empty syringe I'm all about recycling I'm a crafter and I use them for crafting things if you can ship them I'll pay the fee thank you for sharing you story
Becky Griffiths I tried to have one done today but my pain in my enlarged spleen was to bad that I couldn't lay down. But the mri department let me look around the week before the scan so I know what it's like and was told everything about it. What questions do you want to know if I can help answer any questions I will do my best if that helps you out.
I found out from my GI doctor today that if my medication changes he made yesterday in six weeks don’t lead to improvement with my GP symptoms, I’ll need to get a PEGJ placed and he told me to do research on it and I’m scared so I’m trying to watch videos on tubes to prepare. Any tips for a newbie?
I wonder if you have a condition that prevents you from releasing glucagon, or makes you insensitive to it, or makes your liver fail to store/release glycogen. I'm type 1 diabetic, so that impairs my body from recovering from lows, and I've been in the 20s before but I've never dealt with seizures or anything
Phoebe Brunt i belive the amt doesnt have a bloon holding it in which can rub and wear through your abdominal wall, but the amt holds itself in differently
they can’t take the j tube out of your gj tube and make it just a g-tube and then give you a new j-tube? i think jaquie from chronically jaquie is looking at possibly having that done because her anatomy is causing the j portion of her g/j tube to kink. if you have gastroparesis, giving you a g-tube would be the opposite of helpful right? because it still wouldn’t digest your feeds and would cause lots of pain and discomfort? maybe get a second opinion? if they are giving people popsicle tubes and missing the fact that you have a really bad infection for several days... maybe it wouldn’t hurt to get a second opinion.
unfortunately due to my anatomy a single j-tube would have a high chance of rupturing my intestines so we can't do that. Yes a G-tube would NOT be a good solution but it may be our only option. We are just waiting to see how everything plays out and unfortunately sometimes there is no simple solution. But i'll keep pushing through!
I honestly don't know how I found your videos. I think one just appeared in my reccomended box one day. Its so cool to see someone young dealing with this stuff well and being positive about it. I don't know what its like to deal with a chronic physical illness ( I have severe depression but thats probably easier to deal with) but I'm so impressed and inspired by you
Agreed - she is very mature, great at explaining things, and has a great attitude. I think her video was recommended to me from watching the Frey Life (blindfolded feeding tube challenge) and I just really enjoy her videos! I struggle with depression and anxiety myself and can't imagine how difficult it would be to have a physical illness, but everyone has different ways of dealing with things.
I am very happy that the procedure went smooth this time! I can't wait to see more videos, thank you for bringing a smile into my day again :-)
glad everything went well! i had one of those giant tubes (i have NO idea what they are called because i was 8 at the time so i don't remember lol but it was even bigger then yours) but anyways when they switched it out for a smaller one (my gtube is called "mini one" and i still have it, obviously i've switched them out a few times because they get old but i've kept the same brand) but they took it out while i was awake! the dr literally pulled it out of my stomach and i remember it was SO painful. you are so lucky you were asleep haha. i have cystic fibrosis btw and i love being able to watch other people with chronic illnesses because it reminds me that there are people out there who understand! love your vids so much, keep it up and keep fighting girl :)
you're so awesome i love your videos!! im soso glad you had a good surgery this time💕
I used to have a Mickey button when I was a baby. I was born unable to swallow because my nerves were underdeveloped in my face and neck. When I was a toddler, my dad took me to shock therapy where they would shock my nerves in my face and neck to stimulate growth. When I was 3, it finally worked!! I was able to swallow for the first time. But some of my nerves are still paralyzed forever on my face so I’m unable to blink and look around properly as well as smile or make facial expressions.
Sending strength and love your way sweetie! x
I go to that hospital too!! I sent you a DM on instagram! The odds of me coming across your channel is the best thing that’s happened!!
We are sending love! Keep up the fight strong girl!
You are so beautiful, inspirational and very kind.
My first button was a little tight and ended up causing me some issues. You’ll probably be ok, but it’s worth monitoring
Why wouldn’t they go back to an NJ if they couldn’t place another GJ, so that way you wouldn’t have to deal with pain and discomfort from G-Tube feeds; or if worst came to worst, TPN through your port? Love your channel!
really red too you are one strong girl xx
Yayyy! No more popsicle stick and hose!
Hey Mickey, I’m glad you are doing good and everything went well! I was wondering how your shoulder is doing since it sits out of its socket?
Your nails took so cute btw. Is it possible to have just a J tube?
Meredith Wood unfortunately due to the anatomy of my intestines, a plain j tube is too dangerous 😞
It's named after you and everything! ;) Edit: lol I wrote that before I watched all the way through!
Lucky42 I know! It was just meant to be 😊
Wait so is this to replace her nose feeding tube? I do not know the difference between any of these tubes and buttons
I was the lucky first one to watch this
Hi i love your videos I have watched them all and I love your family I have a ? What do you do with your empty syringe I'm all about recycling I'm a crafter and I use them for crafting things if you can ship them I'll pay the fee thank you for sharing you story
When I got mine they put in a different one that was a trial one that ended up breaking and ya it hurt A LOT
(The tube didn’t hurt when it broke) what hurt was after surgery
Where is your "hope" shirt from? :)
I don't know whether anyone's had an mri before but I'm having one in a few weeks and just wanted to know what it's like
Becky Griffiths I tried to have one done today but my pain in my enlarged spleen was to bad that I couldn't lay down. But the mri department let me look around the week before the scan so I know what it's like and was told everything about it. What questions do you want to know if I can help answer any questions I will do my best if that helps you out.
Having an MRI is easy, just close your eyes & breath...it will be over in no time! I've had 20 MRI'S
I found out from my GI doctor today that if my medication changes he made yesterday in six weeks don’t lead to improvement with my GP symptoms, I’ll need to get a PEGJ placed and he told me to do research on it and I’m scared so I’m trying to watch videos on tubes to prepare. Any tips for a newbie?
I wonder if you have a condition that prevents you from releasing glucagon, or makes you insensitive to it, or makes your liver fail to store/release glycogen. I'm type 1 diabetic, so that impairs my body from recovering from lows, and I've been in the 20s before but I've never dealt with seizures or anything
Oliver Likes Cats They have wondered if I have a glycogen storage issue actually!
Where do you live in Minnesota? I live in Minnesota too.
What’s the difference between the mic-key button and the AMP button? Would having the AMP button help? x
Phoebe Brunt i belive the amt doesnt have a bloon holding it in which can rub and wear through your abdominal wall, but the amt holds itself in differently
they can’t take the j tube out of your gj tube and make it just a g-tube and then give you a new j-tube? i think jaquie from chronically jaquie is looking at possibly having that done because her anatomy is causing the j portion of her g/j tube to kink.
if you have gastroparesis, giving you a g-tube would be the opposite of helpful right? because it still wouldn’t digest your feeds and would cause lots of pain and discomfort?
maybe get a second opinion? if they are giving people popsicle tubes and missing the fact that you have a really bad infection for several days... maybe it wouldn’t hurt to get a second opinion.
unfortunately due to my anatomy a single j-tube would have a high chance of rupturing my intestines so we can't do that. Yes a G-tube would NOT be a good solution but it may be our only option. We are just waiting to see how everything plays out and unfortunately sometimes there is no simple solution. But i'll keep pushing through!
Do they drain easily?
Im sorry if this is too personal but did you have cancer? Is that what the port for?
What camera do you use?
Chronically Amy I'm not sure exactly what kind it is but I know it's a Sony. I'm getting a canon g7x soon though and then I'll use that!
Wait not trying to sound rude but can she eat with her mouth idk I'm not sure never know anyone with a tube just curious
Riley Dunn yes and it is encouraged that she tries to eat by mouth but because she has gastroparesis it makes her sick
Oh thanks for explaining
Where do you live? What hospital do you go to?
Suzette Sanborn she lives in mn
why Zebras?
Do your parents ever get tired of you vlogging?