My Morning Feeding Tube Routine
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- เผยแพร่เมื่อ 9 ก.ย. 2024
- Follow me on Instagram: @life.with.stripes
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My mom has a blog about what its like raising medically complex kids, click here to read: www.raisingstripes.blog
WOO SHOUTOUT lol
What the heck, you watch these videos? haha Love you Cod
“Got this tip from Mary Frey; put it in the cabinet” 😂👍🏼
Marina Kiell I love the Frey life
Okay
A) You're a sweetheart
B) Your humor is on point
C) You're adorable!
Mariah Peace ~ hi it's October '20... where is our cute Mickey Girl?
I want to see more day in the life videos including medical and non medical related!
It's so interesting the things that certain places let you do at home vs make you have an appt for. Like someone came to access your port, but Mary does it herself. And you do your granulation tissue, but Amy goes in for that
It's so crazy hey!
Amy was a blessing , I'll forever love her and miss her.
They've shut down all schools here until April 17th, so I feel your pain. It's weird how, in school, you hate it and then you're out due to pandemic and you miss school.
Failynn black for me school helps me keep my routine, now I’m just a sack of potatoes laying in my bed.
I loved it when I was I school too! I love everything about college and it class was one of the highlights of my week! Im so sad its over
:(
my school is shut down until may 1st. i’m in band and i’m up because now we won’t have our band concert or marching band practices for a while :(
Ikr
@@thin_white_duke1 SAME
Hey I had a gtube for 16 years and it never leaked. My mum is a nurse and she stopped putting gauze around it because it just sat moisture on it so it would get really gross. She started just cleaning around it multiple times a day and then it healed really nice and never leaked. The gauze sits moisture on top so it never dries and irritates really bad. Just a thought from what worked for me!! Love your videos and us zebras gotta stick together through these high risk times. Stay safe!
I was just rewatching your old videos yesterday because I missed you, and know you’re back! Yay! Loved the video, makes me feel like I’m not the only one having to do these things. Especially in video form and with your awesome personality!
GIRL!!! I'm an empath and that silver nitrate stuff, dayummm, I felt your PAIN. May I just say how incredibly adorable you are though. When I was your age, I know I wouldn't have been able to handle all the things you have to do to maintain your health. You are a mighty strong woman!!!
This is my first video. I got a feeding tube yesterday. I am still in the hospital. Thank you so much for making this video and for cracking jokes while making it. I'm a fellow zebra and I'm accused of having dark humor. It's nice to know that I'm not alone with this. The tube feeding is alien to me, as I've had a Hickman port for most of this year and I was fed through that. Anyways, thank you again, I'll be watching more of your videos.
I’m 50 years old and having a J-Tube placed in a couple days.
There are few videos on this and I REALLY APPRECIATE you doing this video to educate the rest of us
I have no school until the end of the year. so that's going to be fun.
Same
What? Where do you come from?
@@michelleteutsch8591 England
M2
@@michelleteutsch8591 here in the netherlands if you dont go to primary school you sit at home till summervacation
Mickey, you break my heart! I suffer knowing how you suffer, struggle with life, and yet you always smile! I just discovered your channel and was so, so saddened knowing all you've been through, and yet you are so strong, so positive, great sense of humor that there is no doubt you're a God sent! Your positivity and perspective (INDEED perspective) helps others who are feeling miserable, like I have been feeling for almost 3 weeks. I came across your video because I am having digestion problems and HORRIFIC migraines, specifically severe pain on the back of my skull (I fear a brain tumor). I think it is very cruel for people like yourself who are not able to eat, I don't understand why a higher power would allow this, especially with someone as beautiful, gentle soul, and happy camper as you. I have been suffering for weeks, not able to do anything, nothing to compare with what you're going through, but when I see your videos, I suck it up and only think of you and how I wish you would get better and better and live a long, long life. You are precious! Thank you for sharing, which has helped me so much!
How do you sort and store all your medical supplies? (I know I've seen older videos, but maybe an updated version?) Also maybe medical night time routine?
I would appreciate a full summary of all your conditions, whatever meds you feel like sharing and/or any medical routines. I'm a serious medical nerd and you are so complex, I can't keep everything straight.
I believe she talks about them in an earlier video.
She also talks about them here and if you know anything about medicine then you are probably already familiar with the complications that Ehlers Danlos causes. Go read the Merck Manual on gastroparesis, connective tissue disorders and so on....
I've been with your channel for 2 years and I love it
I know exactly how you feel hon, I've had a stomach tube since I was born and it can be a real pain taking care of it sometimes but you know what every single G tube living human being is stronger than the pain that's felt every day and you can make it through this, I did, so I know you can! Good luck sweetheart, also you're very beautiful!!! 😊❤
Much love to ya! 💓💓💓
You’re such a kind soul and I learn so much from you as a nursing student! Thanks for sharing your life with us love
When I first started watching you (probably a year or year and a half ago) I saw your intro where you have the word "hope" on there and then "Maisy" above the puppers so I just assumed your name was Hope lol
I want to see an updated brace/ mobility aid collection!
I want see a Feeding tube tips and tricks
You've been through a lot, but your eyes are so full of life. I wish you all the best
my infusion port gave me sepsis last november. something i never wanna experience again 😬
Love this! I'm a Frey Life fan! And a fan of yours!!!
I have watched several on here with chronic illness, but you are the cutest, a close 2nd is Kenna K. .what you go through in a day is unbelievable , compared to those of us who can just take eating for granted. Much respect to you 💪
I loved the Mary Frey reference! She’s the best ❤️
You are a inspiration to young people and I’m proud of you
What happen to the service dog you had once?
Actually it would be interesting to see your PT exercises.😉
You are a trooper, I am amazed at your bubbly personality. As a person with gastroparesis, and fellow tubie, I know how hard this is, mine is a j tube and a g tube separate, with Crohn's pretty severe so you portray the good and the bad here and I luv you for that keep it up, ed is miserable thanks for the videos
Thanks for showing this. I'm a neonatal RN and occasionally care for babies with fresh g-tubes (we use Kangaroo and Joey pumps although I have seen a couple go home on Infinity pumps). My sister has POTS and MALS and is trying to get evaluated for EDS, which is how I found your channel. Best wishes for health and safety through this pandemic.
I would love to see another day in the life I love seeing those vids. My mom works with kids like you
I love your attitude about chronic illness which I know personally all too well
Hi Mickey! It’s so nice to have you back on TH-cam xxxxxxxxxxxx
That's a crazy trick with priming lol God bless you Mickey
so nice to hear that other people my age like to read and enjoy school!!
AHHHH I didn't know other people's collarbones popped out tooooo. Thats kinda neat to know!
Could you make a video on how you clean your tubes/medical equipment? Or your physical therapy? I've been in physical therapy for years and its cool to see different methods out there.
You are such a beautiful person!
Both inside and out!🤗
Thank you for sharing your morning routine!
Day in the Life
I love watching your videos! You remind me of my little sister and what she would be like if she had EDS. Thankfully I’m the only one out of all 5 of my siblings that have it. Stay safe Mickey! 💙
I'm the only one out of 4 siblings that have it. My sister is jealous of my hypermoblity but then she sees a joint dislocate and changes her mind 😅
I'm a relatively new viewer and I just came across this video. Sarah's Key is my favorite book of all time. I hope you enjoyed it.
A video you could do that I think would be fun and educational is "how to pop joints back in place" or something like that. Like you could show us how you pop your joints back, and maybe give us some tips and tricks on how to prevent dislocations? Because God knows I could use some advice recently. My joints have been sliding all over the place lately, and they don't want to go back in for some reason, so maybe I just need another technique, and yours could work for me? ❤😘
Your eyes are really pretty! That is really random but I couldn't stop looking at them
I'm so sorry that you were in pain with burning off the granulation tissue! Sending hugs!
I am enjoying seeing you again. Bummer that you are not able to have any online classes right now. Hopefully they will set them up soon so you can keep up with your studies. Stay healthy and happy.
Make a video about all the surgeries you’ve had!
i love your videos and your eyes !!
A house tour would be nice and if there's any ancillaries to help you with your medical conditions
This was so cool! Love your sense of humor and your amazing positivity! Ps I found your channel from tiktok!
Time flies. Now your 19. I feel like you just got 18.
Thank you for uploading again it's so good to see you. Stay safe God bless
Live stream!! We would love that!!
Advise for those who have EDS but didn't test positive on the genetic test? I have all the symptoms, all my other doctors say it should be on my chart but the darn test didn't catch it.... I'm hypermobile and but not hypermobile enough to be hEDS, I'm thinking it's classical actually.
Tips on getting hips and joints in general back in place when they are stuck?
Suggestions for those who have need organization help? (Your room seems so put together now that you've cleaned it!)
(Side note lemon essential oil on a cotton ball takes off adhesive really well just rinse off your skin with water afterwards because it can irritate your skin. It was amazing to find that one out because my skin didn't like to let go of adhesives either.
I watch the Frey life every single day
Yeah, day in the life. Like all the stuff you think is boring - what do you read? Watch? Do for fun? House or room tour? What classes did you take? Obviously just what you feel comfortable with, but outside of medical stuff, we don't know much.
i love sarah’s key! i would suggest watching the movie when you finish the book!
My feeding rate is 60ml/h too! Love Youri video’s! ❤️❤️
Hey there :) I am new here :) I am 23 and I just found your channel 💛 your so strong and amazing :) I lost my dad to cancer two years ago on April 3,2018 🥺😔🤍👼🏼 ! I graduated from college last spring with my degree in general business and received a marketing certificate :) I currently am dealing with patella femoral syndrome and been dealing with this since 2012-2020 but didn’t get diagnosed until 2016 ! i’ve done pt twice and still have symptoms 🙄😔 i see the sports dr monday to see what he’ll say and want me to do ! i use a brace for exercising ! i’ve been strengthening for 10’months and still have pain :( so i hear ya ! I wish people would understand what pain is like ! :/ my knee pain comes and go but no one thinks it real when it is :( anyways your so pretty and strong ! you are inspirational and you make my day ! you even make me smile to :)
❤️❤️love this!!! Could you cover your adrenal issues please in a video? I would love to hear about your symptoms as I have similar issues x
U should do hair style video and vlog more makeup video night time routines
Okay, so do you literally not get to eat anything at all? What do you miss the most, if so?
Also, loving your channel and videos!
I think she can technically eat stuff, but it gets puked back up.
She can handle some water now, but before, she couldn't. She can swallow anything that can be drained from her stomach through her tube, otherwise she has to spit it out
With Gastroparisis you can eat food, but typically if your stomach (especially) and intestines are very paralyzed then you just end up vomiting the food back up. Because you can't digest the food your body sees it as something that shouldn't be there so it makes you feel sick (and vomit) to get rid of it.
I don't know how much Mickey can tolerate eating/drinking but since she requires a feeding tube to get nutrition it must not be a lot. Hope that helped answer your question! 😊
You're brave priming the tube with you mouth. I use to prime by dripping in a cup or sink, but it was a gravity feeding
Wish she still posted on youtbe miss her alot
OmG!! Sarah's Key is my fav book!! There is a movie too!! it made me cry :(
In Italy when a task is simple we say it's "as easy as drinking a glass of water'... some things we just take for granted
It hurt me so much watching you used the silver nitrate. I’m so sorry you have to go through all of that. Praying for you.
Thanks you so much for giving us more videos than usual, with what's going on we're all bored,so we can be bored together:)
I have a 9/9 on the Beighton Scale and bad joints, I don't know what to do.. I am in tween years and do cheer. I love your channel, I have been watching for a while now. ❤❤❤
I'm somewhat glad that I'm only a carrier of CEDS. Some days I'm sure you want to trade some of it.
Love to see you making videos again 😀
I love school too.
Will you get a port back?
I was clutching my blanket the entire time you did your granulation tissue. I used to hate having that done. I’ve now been tube free for about 5 or 6 months now thouh
A video on some of your favorite things would be cool
Can you do a video on your current health and why you don’t hav a port anymore
Jewels W: in an older video. She said it got infected. I think she said she went septic because of it and it had to be removed.
Thank you form sharing this !
I have the same type you do, but mine is type two. And yea I have to deal with my hips subluxations. And always being in excruciating pain! . From one zebra 🦓 to another one I am keeping you in my prayers and sending my love ❤️ to you!
These are amazing ! What do you want to be when you grow up (what are you taking in college?) :)
My dad just got a feeding tube and I wish he could get the Kate Farms instead of what the insurance company gives him. 😕
so sorry about the granulation tissue. i have only ever used GranuLotion . Stings but I don't think as much as Silver Nitrate. and, thank you for the priming trick. I tried it and wow, way quicker and easier. so thanks! and I hope you reamin safe during this pandemic
We switched to online school and almost have no time for anything literally 5 classes a day
I feel you! I'm already homeschooled as it is, and I'm on a program where you can choose how many classes you take at a time, and I can barely manage 3 with my health and just daily life stuff.
@@isthisnametaken6618 I really don't know why but regular classes are more convenient when there is 5 a day but with online it's all over the place beside some professors refusing to do there lectures and only sending their handouts it is frustrating specially in medicine school you just cant possibly study by your own I wish this crisis end sone
I love your lock screen. Hamster 🐹. I love hamsters
He was my hamster that I had for 3 years! His name was stumpy and he only had three legs, hence the name lol. Unfortunately he passed away two weeks ago :(
Life with Stripes cutie. I think I remember that from your Instagram. Three years is a long tome for hamsters. My longest living hamster was Cleo at 2 years and 8 months 😍❤️
Life with Stripes rip stumpy ❤️❤️
Do a updated medical storage video and a daily routine with chronic illness
I'm curious about all the equipment you have for joint dislocations, afos, splints stuff like that
I don't have EDS and you have my absolute sympathy when it comes to that darn Silver Nitrate. Two years ago I had to have a vaginal biopsy and to help in the healing process, yes they had to apply Silver Nitrate on the biopsy area. And it hurt for a week or two......
But when it comes to reading, do as much of that while you're young and your eyesight's good. Cause eyes can and do deteriorate with age and you could suffer from a thing called "Floaters " and whilst you can read with them they can be a bother at times none the less.....☮️⚛️🇦🇺
Thanks for this I am just starting the battle with gastroporesis, actually been longer but they just figured out I have a paralysed stomach 2years ago. I know I probably will end up with a feeding tube and your video was really helpful.
Rebecca Fanning I was diagnosed with Gastroparesis in 2017. It’s definitely rough
Can u try coconut water in the morning and ginger mint juice in a day and fast
I have an autoimmune disorder I hope that CRISPR CAN cure us .... I can feel you that's hard ...... 🌺💐🌻💐💐🌺💔
I vaguely remember a time when you had a bunch of formula that couldn't go through your tube. Now I know where it went.
Do you have trouble with formula spoiling when you add water? My nutritionist warned me against it however I also just got over a blood infection and trying to go with just j and g tubes. It's a struggle, know what you're going through... (My 13th blood infection however this time things got crazy and was intubated for 4 days. So also trying to make the switch from central line hydration to strictly j tube. My GI Dr placed a separate g tube about a month ago which has finally made a difference in my vomiting.) On the struggle bus right now though and probably going to try and get my nurse to start a peripheral iv because I can't keep up... Especially with still recovering from sepsis and fluid pneumonia and trying to avoid going into ER or community right now... My body could not take another thing right now... Prayers you are able to get established on j tube and avoid any exposure to covid!!
You are awesome girl! xx
How do you deal with not eating? If I never got to bite into a greasy slice of pizza again I'd go nuts. Do you ever like, chew up food to taste it and then spit it out? Or do you just not miss tasting things? Sorry if these questions are too personal lol I'm just very curious
She sometimes will eat then drain it out her stomach, thru her g tube. But it can make her nausea if she does eat.
I have the same feedings infinity sets bag and pump love your video 💕
Hi i’m such a big fan
Hey!!
Life with Stripes OMG I love your videos so much
Stay strong baby ❤❤
Do an updated day in the life!
I just starting drinking Kate farms! I have hyper mobile EDS and struggle digesting most things so currently I drink them! The only good one is chocolate but it’s not bad at all.
Thanks
I have a quick question, im gonna start home infusions for pots and I wanna know if all pediatric patients get a portable pump? just wanna ask because I know you get saline infusions too :p
My schools cancelled till September at least.😭 but we are doing online classes so that’s good!