Mickey, I am so happy that the new button works for you! I hated to see you suffer for so long with all the flipped tubes and the pain and the emergency room stays. And I remember how much you wanted the first button and how much pain it caused and how miserable you were when they had to take it out. I am so glad to hear that finally you can feed without pain. So, so happy for you!
It makes me so happy to see you happy about ur feeding tube now. I was on Instagram and I saw all your stuff about your hospital visit, and it makes me so freaking happy to see you happy :) I hope your doing well and I love you lots
Hi mickey! Love your vlogs. I was born with Spina Bifida and due to bladder control issues have had times where I’ve needed a permanent catheter and used grip locks, paper tape and/or tagaderm. I’m unfortunately allergic to all of these. I now use 3M silicone dressing tape. It’s great! No itching and comes off without damaging my skin.
So nice to see a video from you. You look so good. Unfortunately it seems like a lot of chronic illness warriors go through lots of trial and error before they find what works for them. Glad you have been able to find some really helpful items to make life a little more tolerable. Take care and take it easy.
I don’t have a feeding tube but am on KateFarms. I have multiple allergies and food sensitivities. The biggest problem I had with other formulas was the corn products that occur in the first three ingredients. Because I have to drink my formula, I still have problems on days when my gastroparesis and/or bile reflux flares, but overall it is the best I’ve had. And it was people on UA-cam with feeding tubes that introduced me to this wonderful product. None of my doctors and my nutritionist had ever heard of it before I took my carton in to show them. Keep up the good work on spreading awareness of products that work for you.
Hi mickey. I have had a feeding tube for the past 8 months. First an NG, then an NJ, now a triple lumen feeding tube and yesterday i heard I'll soon be getting a straight G and J tube. The J will become a button and the G will become a dangler. These tips help so much. I am so excited to get my face back. This is a nerve wracking step but I'm more than ready for this. Thank you for sharing your expierces, it really helps me stay confident. Keep doing what you're doing.
I had my feedingtube since I was a baby now am about to be 17 April 9 but I never drain my food or have to I was also making a video about my feedingtube too I did on of the feedingtube awardness
I agree with the infinity pump and the kate farms as well!!! I just got mine placed so im getting more things this week that i need. Thanks for this vid
Thank you souch for making this video.. I have been trying to find out the names of the this products that I see people using but yet they never say that it is or where they got them.. Like I was trying to explain grip-loc yo the nurses at the hospital and they didn't know what it was called. I actually spent a few hours last night trying to figure out what it was called and then you post this video and you helped me out with at least 3 different things that I have been wanting to order... Thank you so much... I am so happy that you got your new feeding tube I actually just got a new tube last week. I have had a gastric Mic button for at least 7 years and we have decided that i should have a G-J tube but for some reason everytime the but I the G-J mic my J part would flip back in to my stomach. So now I have to separate tubes which is not fun but I am so much happier being able to feed into my J and the drain out of my G... I know that was a lot to share but it just proves everyone is different not every product works for everyone. Sending you lots of hugs and love from Oregon!!!!
I had the same exact problem with grip loks for a long time. This is why I made the video because I know Im not the only one. Glad I could help and I hope they work great for you!
I have a G tube and its hard to educate people at times including my husband he kept it up and up til I finally try to eat a few bites from the dinner I made him spaghetti and homemade sauce well we winded up calling 911 cause I aspareted to the point i could not breath not fun. I think he sort of got it now that I asparate cause of my strokes I had a hard time so the placed a feeding tube in my stomach still have some problems with granulation around the stoma but the replacing it on the 26 Keep positive u are strong
You are so brave I’m proud of you I stumbled on your channel And you are helpful with products you use I’ve been taken care of my mom for a long time She has a tube feed since 2009 and I’m still caring for my mom she is doing a amazing with all things consider But I’m so honored to care for her And I’m glad I found you The products you mentioned are great Thank you for sharing Wishing you all the best!!!
I had an NG for like 7 weeks from like January to March or maybe February to March....anyway I loved the Tubie clips! I was just diagnosed with GP and it's not looking to good. Tried reglan....nit working to well I have to get domperidone from Canada! As it's not FDA approved but the reglan knicks Me out so My GI suggested I get the domperidone....if that doesn't work I may end up with another NG/NJ or some sort of Tube that goes directly to the jejunum. Good video! If I do end up needing a more permanent tune like a GJ I now have products to keep in mind that will make My life easier! Thanks!
Theresa Lynn hi, not trying to be rude but I’m kind of in the same spot. Our hospital here has a compound pharmacy that’s licensed to make domperidone but I’m curious if you did use it? I’m on Reglan now and absolutely no change in symptoms I’m just worried about the cost of domeperidone now cause insurance won’t cover it
I have GP from type one diabetes of over 30 years. I’m getting a feeding tube in a couple days but something that did help me for a couple years is a gastric stimulator. Ask your doctor about it, may help you.
I live in Ireland so not sure if it's available other places - but I use Mepitac skin tape by Safetac....Its suuuupppppeeerrrrr soft and gentle and I use it everyday without irritation I use it on my G tube and on my face for my oxygen tube at night! I really love it so you should definitely try it to see! It's also waterproof! Great video 💜
My daughter has an AMT GJ and we love it too - one time for a replacement we didn't tell the surgeon clearly that we wanted the AMT and she came out with a MicKey ... 🙄🤦♀️. Worst thing ever! I now have a back up AMT with us in the car at all times that we can just hand to the doctor if we ever need one replaced and they don't have it cuz we are never doing a MicKey gj again!
I'm going to denver to try and see a specialist because there's not a single doctor in South Dakota that will even try to work with my eds😅 so my days of pain and no eating continue😓
i have a feedingtube tooi had mine since I was a baby now am almote 17 I use infantry pump but a big bag and peptamen junior 1.0 and I use guaze becaues I get bad pain and a rash underneth
thats horrible! nobody can dictate how sick a person is or not. they are not living your life. those kind of people will never understand. to them everything must be a lie. seriously, it sucks that you needed to explain yourself. i will pray that you have more blessed days.. you deserve them!
Our Infinity pump is broken? in a good way. It’s muted UNLESS there’s no feed or flow. 🙏🏻 bless that it doesn’t go off when the feeds done. Idk I hated our hospital infinity pump. Edit: have you ever heard of Mepiplex? It works best for inbetween our daughters Tube and skin.
So I have fairly mild eds3( pending genetic testing) how do you handle the adhesive you have to use medically. Any time I've been in hospital or my daughter we get very bad reactions to the adhesive (or even band aids).
I love my Infinity pump too! Mine is purple though, I like your color better :) Do you have any idea why they’re differently colored? Like, is it the brand, or...?
The colors could represent the different setting they have. This teal is a default for most adult users. Our NG baby used the Orange one. It has a special setting that breaks down breast milk differently than formula. This feature isn’t seen in other models. I’m guessing they mean something.
Hi Mickey, my grandson will be a year old June 27th. He was diagnosed with HLHS (Hypoplastic Left Heart Syndrome) when my daughter was 29 weeks pregnant. He got his g tube about 1 ½ months ago. His mom has been using the gauze that the hospital gave her. I want to make some button pads for him. My question is: what kind of material do you recommend I use? I know you said that you have very sensitive skin so I thought I’d ask what you might recommend.
Not sure if you still need it, but I made some for a friend for her birthday that were a fun pattern on the outside, then some towel material in between(for a little extra absorbtion) the outside (that shows) and the back that I did a very soft fleece for her sensative skin. Also, for sensative skin I used embroidery floss since it tends to be a bit softer, and did my best to make sure no stitches were poking through or rubbing. So, whatever patterned fabric, piece of towel, super soft fleece (make sure no fuzzy bits can come off) hope this helps!
I know of one who migrated from my country to Houston, Texas if you're interested? His interest is in motility and I don't know how much he knows about EDS but he's definitely seen some people back in Ireland with EDS, one of whom is extremely complex and they had only good things to say about him
I am so sorry you are having so much trouble but I laughed so hard at this comment. It speaks so much truth into what its like to find doctors with EDS
There is this great doctor that I go to in Texas her name is doctor Brigman Catherine L MD I love her she give me new medicine and test for my tube and sometimes change my food you should check her out
The small snap (round thing on the clip) snaps open & close to hold all the tubing in it! And then you use the metal clumpy at the top to clip it on yourself/your bag or whatever!
I've wanted to try Kate Farms formula because the formula I use right now sits really heavy in my intestines and always makes me feel bad, but I'm not sure how to get Kate Farms. Does it come from my supplier or do I have to buy it?
I hope by now, you are already using Kate Farms! My daughter just changed to Kate Farms last month. They we got it approved, was doing some research and recognizing the symptoms of a formula that is not right for you! If you feel ill, bloated, gassy like never before, then it's the formula. She told the Dietitian, and the dietitian looked for options, and now she's on Kate Farms! She's right! It's a plant based formula, and so far it's been an awesome change. Good luck to all you brave peeps! Mom. :)
Mickey, I am so happy that the new button works for you! I hated to see you suffer for so long with all the flipped tubes and the pain and the emergency room stays. And I remember how much you wanted the first button and how much pain it caused and how miserable you were when they had to take it out. I am so glad to hear that finally you can feed without pain. So, so happy for you!
I. has ack this how was it like wen u got a feeding tube i may have to get a feeding tube i am struggling eating
Hi Mickey really glad you don't have anymore pain with your feeding tube since getting the new button.
I'm so happy to hear that you have no pain with your feeding tube!! Love you!!❤❤
It makes me so happy to see you happy about ur feeding tube now. I was on Instagram and I saw all your stuff about your hospital visit, and it makes me so freaking happy to see you happy :) I hope your doing well and I love you lots
Hi mickey! Love your vlogs.
I was born with Spina Bifida and due to bladder control issues have had times where I’ve needed a permanent catheter and used grip locks, paper tape and/or tagaderm. I’m unfortunately allergic to all of these. I now use 3M silicone dressing tape. It’s great! No itching and comes off without damaging my skin.
So nice to see a video from you. You look so good. Unfortunately it seems like a lot of chronic illness warriors go through lots of trial and error before they find what works for them. Glad you have been able to find some really helpful items to make life a little more tolerable. Take care and take it easy.
Great to see you again MIckey! You're looking great. I hope that college is going well for you and look forward to future videos.
Gosh i have been watching you for a year now and you are the most inspiring youtuber ever, keep doing what you do 💕
I love how positive you are. I have a condition where I get injured easily (OI type 1) and It can be a bummer. I wish I could be as happy as you are.
I don’t have a feeding tube but am on KateFarms. I have multiple allergies and food sensitivities. The biggest problem I had with other formulas was the corn products that occur in the first three ingredients. Because I have to drink my formula, I still have problems on days when my gastroparesis and/or bile reflux flares, but overall it is the best I’ve had. And it was people on UA-cam with feeding tubes that introduced me to this wonderful product. None of my doctors and my nutritionist had ever heard of it before I took my carton in to show them. Keep up the good work on spreading awareness of products that work for you.
I don’t know if anyone knows, but the kangaroo Joey pump now has the option for 500 and 1,000 ml feed bags
Yes when there was a shortage of them I got the 500mL bags and it was good for me in the day but not at night but now it is back to the 1,000mL bags
You can see the joy in your eyes!! It’s so great to see you without the pain.
Have a wonderful night 🦋
Hi mickey. I have had a feeding tube for the past 8 months. First an NG, then an NJ, now a triple lumen feeding tube and yesterday i heard I'll soon be getting a straight G and J tube. The J will become a button and the G will become a dangler. These tips help so much. I am so excited to get my face back. This is a nerve wracking step but I'm more than ready for this. Thank you for sharing your expierces, it really helps me stay confident. Keep doing what you're doing.
Hi, do you mind me asking what the 3rd lumen is for? I've come across double lumen for J feed plus G drain. Is it for fluids/meds?
@@sorchaoreilly2633 it's for venting air. It's an automatic system that vents air out of the stomach
I had my feedingtube since I was a baby now am about to be 17 April 9 but I never drain my food or have to I was also making a video about my feedingtube too I did on of the feedingtube awardness
Glad you’re back!!!!
I use Kate Farms and I requested to get put on Kate Farms because I saw your videos about them in the past and I love it!
Great video, Mickey! xxxxx You’re looking so much more at peace too, So I pray that things are better for you xxxxxxxx
I agree with the infinity pump and the kate farms as well!!! I just got mine placed so im getting more things this week that i need. Thanks for this vid
I love your hairstyle 💁♀️
Thanks!
Good to see you back, I'd missed your videos and had wondered if things were going ok with you.
Thank you souch for making this video.. I have been trying to find out the names of the this products that I see people using but yet they never say that it is or where they got them.. Like I was trying to explain grip-loc yo the nurses at the hospital and they didn't know what it was called. I actually spent a few hours last night trying to figure out what it was called and then you post this video and you helped me out with at least 3 different things that I have been wanting to order... Thank you so much... I am so happy that you got your new feeding tube I actually just got a new tube last week. I have had a gastric Mic button for at least 7 years and we have decided that i should have a G-J tube but for some reason everytime the but I the G-J mic my J part would flip back in to my stomach. So now I have to separate tubes which is not fun but I am so much happier being able to feed into my J and the drain out of my G... I know that was a lot to share but it just proves everyone is different not every product works for everyone. Sending you lots of hugs and love from Oregon!!!!
I had the same exact problem with grip loks for a long time. This is why I made the video because I know Im not the only one. Glad I could help and I hope they work great for you!
Hi sweetie love your videos and we pray for you a lot
I love your channel! I don’t have a feeding tube, but one of the kids I baby sit has a feeding tube.
I have a G tube and its hard to educate people at times including my husband he kept it up and up til I finally try to eat a few bites from the dinner I made him spaghetti and homemade sauce well we winded up calling 911 cause I aspareted to the point i could not breath not fun. I think he sort of got it now that I asparate cause of my strokes I had a hard time so the placed a feeding tube in my stomach still have some problems with granulation around the stoma but the replacing it on the 26
Keep positive u are strong
You are so brave
I’m proud of you
I stumbled on your channel
And you are helpful with products you use
I’ve been taken care of my mom for a long time
She has a tube feed since 2009 and I’m still caring for my mom she is doing a amazing with all things consider
But I’m so honored to care for her
And I’m glad I found you
The products you mentioned are great
Thank you for sharing
Wishing you all the best!!!
I had an NG for like 7 weeks from like January to March or maybe February to March....anyway I loved the Tubie clips! I was just diagnosed with GP and it's not looking to good. Tried reglan....nit working to well I have to get domperidone from Canada! As it's not FDA approved but the reglan knicks Me out so My GI suggested I get the domperidone....if that doesn't work I may end up with another NG/NJ or some sort of Tube that goes directly to the jejunum. Good video! If I do end up needing a more permanent tune like a GJ I now have products to keep in mind that will make My life easier! Thanks!
Theresa Lynn hi, not trying to be rude but I’m kind of in the same spot. Our hospital here has a compound pharmacy that’s licensed to make domperidone but I’m curious if you did use it? I’m on Reglan now and absolutely no change in symptoms
I’m just worried about the cost of domeperidone now cause insurance won’t cover it
I have GP from type one diabetes of over 30 years. I’m getting a feeding tube in a couple days but something that did help me for a couple years is a gastric stimulator. Ask your doctor about it, may help you.
Your videos are so informative and are very helpful.
This video is SOOOO good!! Nice work!!!
I live in Ireland so not sure if it's available other places - but I use Mepitac skin tape by Safetac....Its suuuupppppeeerrrrr soft and gentle and I use it everyday without irritation
I use it on my G tube and on my face for my oxygen tube at night! I really love it so you should definitely try it to see! It's also waterproof! Great video 💜
My daughter has an AMT GJ and we love it too - one time for a replacement we didn't tell the surgeon clearly that we wanted the AMT and she came out with a MicKey ... 🙄🤦♀️. Worst thing ever! I now have a back up AMT with us in the car at all times that we can just hand to the doctor if we ever need one replaced and they don't have it cuz we are never doing a MicKey gj again!
How do you get the spare AMT?
@@ry.butterfly we had really good relationships with our hospital and Dr's and they made it happen 🤷♀️
@@kaytlinmangelson6673 that's awesome!
Can you do a brace collection video?
I'm going to denver to try and see a specialist because there's not a single doctor in South Dakota that will even try to work with my eds😅 so my days of pain and no eating continue😓
i have a feedingtube tooi had mine since I was a baby now am almote 17 I use infantry pump but a big bag and peptamen junior 1.0 and I use guaze becaues I get bad pain and a rash underneth
17 years? Be proud of your toughness
thats horrible! nobody can dictate how sick a person is or not. they are not living your life. those kind of people will never understand. to them everything must be a lie. seriously, it sucks that you needed to explain yourself. i will pray that you have more blessed days.. you deserve them!
good information prayers
Our Infinity pump is broken? in a good way. It’s muted UNLESS there’s no feed or flow. 🙏🏻 bless that it doesn’t go off when the feeds done. Idk I hated our hospital infinity pump.
Edit: have you ever heard of Mepiplex? It works best for inbetween our daughters Tube and skin.
This was super helpful 😀
So I have fairly mild eds3( pending genetic testing) how do you handle the adhesive you have to use medically. Any time I've been in hospital or my daughter we get very bad reactions to the adhesive (or even band aids).
naseerahvj two dressings that are safer for many are IV3000 and Sorbaview but not every hospital carries them. Personally I use Sorbaview
@@madison8568 Yes I agree! I use IV3000 as I had very bad allergic reaction to everything else!
I love my Infinity pump too! Mine is purple though, I like your color better :) Do you have any idea why they’re differently colored? Like, is it the brand, or...?
The colors could represent the different setting they have. This teal is a default for most adult users. Our NG baby used the Orange one. It has a special setting that breaks down breast milk differently than formula. This feature isn’t seen in other models. I’m guessing they mean something.
Isn't funny that, the doctors, never tell you anything. You have to find out for yourself.
Hi Mickey, my grandson will be a year old June 27th. He was diagnosed
with HLHS (Hypoplastic Left Heart Syndrome) when my daughter was 29 weeks pregnant.
He got his g tube about 1 ½ months ago. His mom has been using the gauze that
the hospital gave her. I want to make some button pads for him. My question is:
what kind of material do you recommend I use? I know you said that you have
very sensitive skin so I thought I’d ask what you might recommend.
Not sure if you still need it, but I made some for a friend for her birthday that were a fun pattern on the outside, then some towel material in between(for a little extra absorbtion) the outside (that shows) and the back that I did a very soft fleece for her sensative skin. Also, for sensative skin I used embroidery floss since it tends to be a bit softer, and did my best to make sure no stitches were poking through or rubbing. So, whatever patterned fabric, piece of towel, super soft fleece (make sure no fuzzy bits can come off) hope this helps!
@@itsaneel thank you for your reply. This is helpful. I still plan on making him some as he still has his g tube
Yaay you're baack
i spy a tummy terror hair bow in the back :)
yes you do! 😉
12:16 Of course you don't!
I wonder what it taste like.
I think vanilla
#GetStrongWithMickey
I'm still trying to find a GI who knows that there's connective tissue in the intestinal tract 🤷♀️... the joys of living in Texas 🤦♀️
Oh no, I'm so sorry. As if medical problems weren't hard enough. Hope you find a good GI soon.
I have a really good GI dr in NW houston
I know of one who migrated from my country to Houston, Texas if you're interested? His interest is in motility and I don't know how much he knows about EDS but he's definitely seen some people back in Ireland with EDS, one of whom is extremely complex and they had only good things to say about him
I am so sorry you are having so much trouble but I laughed so hard at this comment. It speaks so much truth into what its like to find doctors with EDS
There is this great doctor that I go to in Texas her name is doctor Brigman Catherine L MD I love her she give me new medicine and test for my tube and sometimes change my food you should check her out
thank you for the video
Hello, I was wondering how do you insert the cord into the clip so that it stays in place and the loops don't come loose? Thanks in advance
The small snap (round thing on the clip) snaps open & close to hold all the tubing in it! And then you use the metal clumpy at the top to clip it on yourself/your bag or whatever!
Why are not you on the instagram?
? What do you mean?
@@ChronicallyUnique Is Mickey on the instagram? I do not see her
@@AliAli-pq3od yes. @life.with.stripes
@@ChronicallyUnique maybe make bluck for me
Do u ever get hungry ?
i have a feeding tube
I've wanted to try Kate Farms formula because the formula I use right now sits really heavy in my intestines and always makes me feel bad, but I'm not sure how to get Kate Farms. Does it come from my supplier or do I have to buy it?
kate farms comes from home health. you can buy it but it’s insanely expensive
I hope by now, you are already using Kate Farms! My daughter just changed to Kate Farms last month. They we got it approved, was doing some research and recognizing the symptoms of a formula that is not right for you! If you feel ill, bloated, gassy like never before, then it's the formula. She told the Dietitian, and the dietitian looked for options, and now she's on Kate Farms! She's right! It's a plant based formula, and so far it's been an awesome change. Good luck to all you brave peeps! Mom. :)
Can you go swimming?
Yes!
Did you get a hair cut
First comment yay
How tall are you
@Jessica Ancelet I guess I havent watched it yrt
she said 5' 1" in another video
So, kind of confused, does your liver work?
I'd say more than likely, don't think people can live without a working one'
You look so pretty
powerful
Hey
Hey!
Hiii
Can you cass would
#GetStrongWithMickey