We conquered another new medical procedure! What was YOUR victory today? Good morning at work? Successful day at school? Leave your victorious moment in the comments! Keep up the good work, friends!
I was able to get some stuff done around the house (including finally figuring out what was causing the mysterious puddle in my bathroom) despite not feeling great.
I'm a nursing student and the reason the procedure is not sterile is because you GI tract is not sterile unlike your blood. I love watching you guys. I've learned so much information that helps me make connections when I go over it in class.
Same here! I am a nursing student and I've got clinicals/placement at the paediatric hospital and apparently the ward I'll be on has a lot of children with cystic fibrosis, I've definitely learnt a lot from her channel
+Kaydi B if you think about it, your GI tract is actually external to the rest of what's inside the body (organs, tissues, bones etc.). Since it starts from the oral cavity and ends with the anus it's just like a pipe with valves ( or you could pretty much tie a rope-that has gone through the mouth and come out of the anus- in a knot; as gross as that sounds) so that's why it's not sterile like the cardiovascular/circulatory system for example, which basically self regulating and cleaning. Still you want to minimise any possible risk of infection of course :P
Thank you so much for posting this. My daughter has a Gtube and we are going to change her button for the first time today at home. This really helped her and me in so many different ways. THANK YOU!!!! It was a great review for me and helped show my 7.5 year old "that I don't need to be scared." Bless you both. PS. My daughter has blood sugar issues too, so it was awesome for her to see someone else needing to stop and eat.
My victory for today was smiling and laughing with my students. I was having a hard day and ended up having a breakdown on my lunch after a few REALLY hard days. Once my co-worker was able to help me talk through my emotions, listen, and pray together, I somehow found my smile again. Today, smiling felt like a victory because I feel like I have had fake smiles since about Sunday. Fake it til you make it.
I had a button when I was a child due to severe gastrointestinal issues, this brought back memories. Seeing you conquer your health problems and overall live a normal happy life gives me so much happiness. Keep on going strong, sister!
Hey, my names Aimee and I’m 12. In April 2016 I was having pain in my right leg. I went to hospital and they did tons of tests. A CT scan, many X-rays, MRI scan, a bone scan which I had to have a cannula, a blood test and so many more. They was unsure what it was, they didn’t know if it was cancer. They actually thought it was Cystic Fibrosis. After a year, (I was 11) they told me that it was a Nonossifying Fibroma. To this day, I still am unable to do PE sometimes (mainly hockey and rock climbing) and long , uphill walking, but I’m back to my regular health again. Since then, after almost two years I have come so far. I’ve turned 12, experienced some horrible tests and appointments, suffered with anxiety worse then ever, made new friends and had new experiences. You have really inspired me, Thankyou.
Mary, you need to add some protein to your snacks when your glucose drops. If you just eat sugar, it will raise and crash again. You need about 15 grams of carbs (the sugar) and just a little protein to keep things on an even keel. Try a little peanut or almond butter, a few bites of beef jerky, a piece of two of deli meat wrapped up with a bite of cheese. Things like that. It really does help!
My victory was that I had a panic attack in school, but I controlled the situation. I did pass out and was sick, but an ambulance was not called! I woke up and calmed down enough to walk! Big achievement for me, it often goes a lot worse! Love and hugs from Scotland, Jenny xx
My heart is with y’all. I will keep you guys in my prayers. My mom passed due to a brain tumor. To show what you go threw on a daily basis is so inspiring. Thank you for sharing with us.
I have a friend with twins born at 24 weeks and to teach their older child about the twins ventilators, and trachs, and everything else they used baby dolls and hooked them up just like the twins. Great teaching tool!
You are the most remarkable young lady...I avoided my feeding tube so far, and been many years, but this now does not scare me, I am 65 years old with barrettes decease and my esophagus is going, you honey have made me not so afraid and I bless you for that.
My 11 yr old daughter just got her mini button 6 months and will be changing it for the first time next week. We are so thankful for your channel. You put her anxiety at ease. Before she got her button her gi dr gave her a teddy bear with a gtube in it :). And she has a scar under her Belly button like my daughter
My sister has a mini button. She is premature by a month or 2. She was 2 pounds and a few ounces. She nearly died. But was saved by prayers and the medical treatment! She still has it she's 13 and people always ask what it is but she says something like a belly button. Her used to be friend said ewww that's disgusting. I fired back
it funny how fast you can change a feeding tube. my 5 yr pulls her out and laughs every time as she tells me if feels like a fart coming out of her tummy. lol She is going into kindergarten and pulled up her dress and told the teacher that she fart thru her tummy.
So cute. I'm a pediatric nurse and had 2 pts that are twins and they would pull out each other's tubes thinking it was the funniest thing ever! While fully inflated, I would think it was slightly painful.
Vikki Daniels maybe teach her tack and dignity. Not every child in her class is going to understand and you can not expect them to. Correct that! No 5 year old should EVERRR be lifting her dress for adults. Talk to her xo
When I first started wearing an insulin pump I was given straight and angled infusion sets. The angled ones were really painful for me to wear, so I put the rest of them in a bunch of different stuffed animals. I loved doing surgeries (sewing holes) and making casts (out of gauze pads) for my stuffed animals. It was cool having a real medical device that I could use on my toys when I played doctor.
I’m a support worker and one of my clients had a peg for the first 3.5 years I worked with her. She had challenging behaviours and everyday she would pull her peg out at least once so I basically became a pro at putting it back in! It’s honestly the easier thing to do!
That turtle is adorable. There is a company that gets stuffed animals from build a bear and makes a customized stuffed animal for a particular person. They are called tubie friends and you can get almost anything that you have in or on you. Like a port and the feeding tube. I have a stuffed cat that has the same catheter I have and a feeding tube along with a PICC line, oxygen, heart monitor leads, a sticky pulse ox, a knee splint from when I had surgery as a teenager. I just made him myself. Got a lot of supplies from my house and found others either at the hospital during an admission and eBay. One thing you might want to consider is inflating the balloon with air just incase it bursts. For the catheter and the feeding tube I got some thread the same color as the animal and sewed them in place because they kept falling out when the balloons inevitably lost their air.
cool!...hey, sweet Mary, my endocrinologist told me not to eat solids for low blood sugar any more, he says fruit juice is faster because your body doesn't have to spend so much time breaking it down...
IMChrysalis A crew of paramedics got me to eat a few biscuits once but it kept going down for me. So I say there swishing squash/juice round my mouth and then drinking it over and over again until it finally went to normal lol. They said that the gums can absorb it quicker or something so it helps blood sugara? So weird!
when I can feel mine going down but I'm not dizzy or anything yet I eat candy too and I'm fine for me juice or soda doesn't have enough sugar at least alone to bring it where it needs to be so it'll bring it up a bit quick but it'll still fall again and I've been told it's only for when you can't quite wait for food or to at least give you enough power to eat something if you're about to pass out..cfrd is much different than regular type 1/2 diabetes and even then every case is different so what works for one may not work for all
This was so cool! I loved how you put the other feeding tube in a stuffed animal. That is something you can perhaps share with your team for children to help them feel like they have a companion with them.
I have a bear named Terry, he has a PICCline in one arm , an IV in the other arm, a hospital band on his foot, and an NJ tube in his nose. In a week I'm having a GJ tube and port placed so he will get a Port and GJ tube. Little stuffed animals always make it more fun :)
Thank you so much for posting this! I am a first year nursing student and being able to learn, not only through textbooks but through watching videos like this helps me learn so much more. Again, thank you so much! It’s greatly appreciated 😊
Thanks for this! I had a GJ tube before, which was horrendous (I, more than once, threw up the end that SHOULD HAVE BEEN IN MY JEJUNUM, and then either had to swallow it while not choking to death, or yank from my stoma (gastric stomas, are just…not super, if you have stomach problems), and frequently just had to live with a punctured balloon (thank you for showing the balloon outside the body, I now understand why the poor balloon kept dying)), and now I’m going in for a jejunostomy for them to put in a J-tube, and I knew you’d had one, Mary, so here I am. (Thank you for making it look easy. 😊) 💚Sasha
I just changed my little boy's g-tube (he's 2), and he was so good for it! I'm glad to know that it doesn't hurt. He has a little bear stuffed animal with a feeding tube. We got it from the tubie friends website :)
I had watched this when it came out, but came back tonight because I just found out a long term friend on mine with CF just got his and wanted to refresh my memory. I am so happy for him, it seems he is doing really well after years of watching him battle with food, cognition, weight etc. Poor dears
Mary, YOU are absolutely delightful, yourself! No matter how your days are going, you always have a smile on your face! I just found your channel the other day and I can't stop watching your Vlogs! You, Peter and Ollie make a DELIGHTFUL team! "Do what you think you can't do"!
I know this video is 2 years old so you most likely will never see this but just in case I wanted to say Thank you for sharing this. My daughter has mitochondrial disease and our Dr’s are recommending a GTube and we have been so nervous. This calmed a lot of my nerves!! So thank you!!
Mary, I wish you would see an endocrinologist for your blood sugar problems. I worry when you eat candy to get your blood sugar up. We know in "normal" people foods like candy cause the blood sugar to spike followed by a crash. There are better foods that can give a more stable and sustained blood sugar elevation. 🙏🏻💜
20g of carbs or a glass of OJ is good for raising your BS for a sustained amount of time. Candy will temporarily increase it and then result in a crash.
I'm so glad I saw your video. I used to change my son's button but because he was non verbal I never knew how it felt. If he could get his hands on it he would pop it out with the balloon still inflated. He only ever did it on school days! Even kids with disabilities like to skip school!! We put a button in a teddy bear too. It was a great way to show other kids how it worked and he loved his bear that had a matching tummy. We were blessed to have him with us for 5 1/2 years. Thank you for sharing your journey!!
All I can say to this is thank you! I stumbled across this video and your channel completely at random. With spooky timing. I'm a final year nursing student and my last lecture was based on alternative methods of feeding including feeding tubes (NGs) and ones similar to yours now. Thank you for sharing your life experiences and helping to put theory into a more 'practical' scenario
Simple I LOVE HER ATTITUDE. Maybe my guts will fall out. Lol It’s funny I do construction and people act like life is over if there roof leaks or toilet doesn’t work. But yet you have a good attitude and make life what you want. Hands down. I hope in some way somehow things get better or more easy or whatever for you.
Thank you, a wonderful video of fun and instruction. I too have a Mic-Key button and your video was a great help for me to overcome my nervousness about changing it myself at home. But, also I knew it was not that hard and can be easily changed at home as you have shown. I probably would have just got it changed at the hospital where it was put in but it is an hour's drive both ways so this is a much better alternative. There is a neighbor lady a couple doors down who was a pediatric nurse but was never exposed to the Mic-Key button. I think because she mostly ended up on the road being a teacher to other nurses and it didn't cover this area. Anyway, She never did any Mic-Key buttons but knew someone with a child that has one and learned more about them from her and she watched this video on the internet before she came over to learn more about them so she agreed to help me change it. So actually she pulled it out and put the other one in and I filled the balloon inside with the amount of water called for. That was the first time. Five months had passed so she came over again recently, 6/21/24 just to stand by in case I needed help. So this time I changed it by myself. It went well. So I took the old Mic-Key Button balloon retainer water out, removed the old Mic-Key Button, and slowly and steadily pushed the new one in but the odd part is at least for me is I felt a bit of resistance and then it goes through my outer skin layer and I pushed some more and I felt resistance from my stomach, and then it goes through my stomach in the rest of the way sort of like a bump through my outer skin layer and then a bump through my stomach and then I put the balloon retaining water in and I was done. I figure this bit of resistance I am encountering is actually good because it indicates it is snug and that is probably why it does not leak and barely seeps at all. Thank you Frey's, you can be sure your videos are helping people, they helped me, thanks so much, Take Care, and God Bless Russ
"It is stained yellow from the stomach juices" *giggles* you are such a bright soul I don't have CF but I subscribed because who doesn't love people with positive vibes! God bless
When I was being trained on how to feed a patient with a feeding tube we had a babydoll with a feeding tube in it we used to go through the motions of connecting it
I am sure every nursing student that watch your videos love your videos, thank you so much for sharing and giving us the opportunity to further our understanding!
I think medical device/procedure dolls like that are probably pretty common in hospitals that deal with kids. When I was a baby and diagnosed with retinoblastoma, one of the first things they told my mom was to get me a 'hospital doll' they could use to show me all the procedures on before they did them to me. Once I got older they ever gave me a little 'eye exam doctor's kit' with a mask for anaesthesia and empty eye drop bottles. I named the doll Charlie and I still bring her to the doctors actually, despite now being in my 20s, haha
You two are awesome! Your positive attitude is so contagious, you made me smile throughout your video. This is what a relationship is all about...support, guidance, having fun and impacting others around you while doing it! This is true love!
You need to make a doll or stuffed animal with a feeding tube and port for your nephew. Your mom should make it a chest vest ❤️. My son has a bear with a feeding tube, trach, and port I placed and a wheelchair from build a bear. I need to make it a chest vest and a nebulizer mask. It helps other kids that come to visit understand Michael a little easier. ❤️ (I cut the needle out of a port access needle and just sewed the top part down really really well so it looks like he's accessed) 😊 a little Stuffed Ollie would be awesome to go with it ❤️
Yes I remember watching a doco about 2 little Irish girls that were Siamese twins. They where preparing them to be divided. They were about 2 or 3 from memory and they wanted to tell and show the girls what was about to happen to them. They used a couple of Cabbage Patch Kids and joined them
together the same way they were joined together but with Velcro. Then they would tell them about the babies being seperated just like them. They gave each one the same names as the girls and they were blond, blue eyed with curly hair, just like the girls. When they pulled the dolls apart they showed
I’m about to get a low profile feeding tube tomorrow. I’ve had the normal kind but they keep coming out. I’m glad to see this video. I know it’s 4 years old but I really hope you’re just as vibrant and wonderful 💙
This was so very interesting! Good job Mary! And you explain everything so well. It makes feeding tubes seem not so "scary" :-) this will help so many out there. I thought it was so funny seeing the big smile on the turtles face when Mary was putting in his feeding tube, this should be shared to all the children's hospitals to the kids who have to get a feeding tube. You guys are the best! Love and hugs to the 3 of you, see you tomorrow!
Saw your video and it gave me the confidence to order a replacement for mine. If you can't believe it I am at around 22 months since my last replacement! I was dreading going to radiology when I knew it wasn't that hard to do. Hopefully I won't regret it but I think it's pretty straightforward.
So glad to hear about the new addition to your family!!!! Say hi to the new guy for me. Nice to meet you "Tommy, The Feeding Tube Turtle" I gotta say, he looks more like his momma! LOL! we Love how you guys always take the mundane everyday issues of chronic disease, and turn them into something fun and exciting. Which is giving me a chance to try it myself.
I've had a gtube for going on like 3 years. I recommend saving the gtube guide (blue stick) it's a nice helper putting in new tubes and they don't always come with one. And when your changing them that's the best time to get a good cleaning of the area when it's out. Don't worry it won't close up for quite a while so you have plenty of time to clean and take you time
Ive changed my feeding before where it was changed & I guess I had air in my stomach so when i coughed or laughed my stomach literally made a farting sound!! Was embarrassing but whatever :) Im totally gonna boil my old feeding tube & put it in a stuffed animal. I always wanted to do that but didnt know how!! Thanks how I first learned about the feeding tubr when I was younger. A doll had one. (:
My brother had a feeding tube and the hospital actually made him this stuffed animal with the feeding tube in it and I was 3 years old at the time and I thought it was the coolest thing ever. My brother got better but spent years with the tube in but eventually was removed and is doing well now. It's really neat seeing someone else who has one too and to know that you're not the only one out there.
I had a G-tube (Mickey button) from around 2 years old but got it taken out permanently around 4 months after my 15th birthday! I was on continuous feed over night as I have a rare liver disorder. It's called Glycogen Storage Disease (I much prefer to say Glycogen Storage Disorder, sounds a bit nicer than "disease"😂) I have type 3! It's a genetic disorder, it's caused by a deficiency of the glycogen debranching enzyme, this causes a buildup of glycogen which impairs the function of certain organs (all patients differ) especially the liver, muscles and heart. It affect 1 in 10,000 births. As I have a efficiency in the glycogen debranching enzyme my liver can't regulate my blood sugar levels, this is why I was on continuous night feed. I watched the part where you said the sugary sweets didn't bring them up, I struggle with finding this to keep my sugars at all normal level, I use 2 tablespoons of raw cornstarch (called cornflour in the UK) at night mixed(HAS TO BE RAW!) with 100ml of milk! You can't put something with high sugar into it because as my doctor explained it begins to "cook". Cornstarch is a slow release sugar and it's honestly AMAZING! I've started using it in the day and it's a life saver! Of course I'd suggest seeking medical advice if you were thinking of using it. It's what a lot of people with GSD use into as treatment and it's can be found in any local supermarket!
My 3 year old godson has been through this process for his whole life and now has a G-tube and a J-tube. And I've never seen his go in. So glad I came across this video! Thank you for sharing!
Oooh, Mary! You should put the old button in a stuffed animal, like you said, and give it to ...is it Lily? You know, the daughter of your friend who trained Ollie? I bet she would LOVE that!
Thank you so much for this video, I'm getting my G/J in the next few weeks and this really helps. I knew literally nothing about feeding tubes before this week, so it was a bit overwhelming when the topic first arose. 🙂 It's reassuring to see how simple this actually is, and it looks like much less of a hassle compared to the port. I admittedly still don't have a clue about how the feeding works yet or what bolus (?) is... but at least now I have a general idea of what they'll be putting inside of me. ☺️ Thanks again!
I feel honoured that you share all your first moments, that should be just you guys know about, since it's your first time it can be scary or make you anxious.
I'm laying in bed watching this video with my sleeping husband next to me. It took everything I have not to start laughing out loud when you were performing surgery on Tommy the Turtle. So funny. Ollie isn't to happy about it though. Poor Ollie.
Great to show people, my son used to have a peg tube which I could change In a few minutes, now he has a jejunostomy tube and it's so much hassle to get changed because hardly anyone uses it these days. Hope you have a great Christmas 🤶 x
I think that rice is Japanese inspired, but it's grown in California. I love those rice cookers. We have one. I'm half Vietnamese so a rice cooker is a must. Lol.
I just see this video of you and husband, I must say that you guys are amazing. God bless you young lady. Thank you for being the way you are. Love always Andy
emilymsymons it's because the balloon is filled up pretty much and it takes a lot of force to pull the balloons out. I work in a nursing home and I've caught the feeding tubes on clothes before and they've never come out before. It takes a lot of force.
I had a feeding button for most of my life, I give props for you changing it yourself because I was so sensitive and protective of the area... it gives such a weird sensation.
I don't know where you guys live, but in Louisiana, rice pots are in all homes.. I moved to Texas in 1995, and there were none available. Nobody sold them here. My wife's friend paid for ours, and we bought her one. And they last for a long time!!!, ty for the video, It will help those who have to do the same thing.
Awww Tubie Tommy 💜there is a company non profit that's called Tubie Friends, where they put button gtubes into stuff animals and give them to feeding tube children .....my son was given one by some pirates when he was in the hospital ☺
i work as a teacher aide in a class where four of our students use the feeding buttons and i'm waiting for my training to change them but i was so worried about it until this video !! when i first fed one of them through their tube my hands were shaking and i thought i was going to hurt her lol but she fell asleep halfway through. after seeing this i can't wait to take my training so i can better support my students
Funny story about tubes, I've got a Mickey G tube and a Mickey J tube. About a month ago my g-tube button fell out and I did't have a spare at home. The button was ancient, as in 9 months old I thnk...(I kept ignoring it since I've never once had one fall out in 6 years of having tubes so I changed them every 3-6 months). I didn't want to go to the ER so ran to my ER (I'm an emergency DVM). I called ahead and asked one of our techs to see i we had a 20 fr foley (urinry catheter) and she said no. I swore we did so I walked in to the clinic and eveyrone was freaking out I was there since I was home sick due to having caught Tularemia from a patient. I showed them my G-tube and said I didn't want to go the ER. Only one person in the room know what I was holding up. I grab some sterile lube, dig through out catheter area to find what I want, go to the bathroom and put in the u-cath. The owner of our clinic was so confused when I walked out with it hanging down. Moral of the story always have a back up tube. Now I have a new button in and a back up at home. I get a new J tube put in Monday but have to have IR do it since I have a 45cm tail on it as I have reverse motility so I have to have the formula and meds be down far into my jejunum otherwise it just goes back into my stomach.
It did not close in that time frame. It would have if I didn't get the foley in there w/in 2-4 hours. I did not mention in my story my DME didn't get my replacement by the next morning and I had a bad vomiting spell.The internal balloon ruptured on the foley and the tube fell out when I was sleeping so I woke up with no tube in me. Thankfully I put the tube in the hole to keep it over and taped it in place waiting for fed-ex to bring me new tubes! Life as a Tubie is an adventure LOL
I had my first port and feeding tube placed when I was 9 months away from finishing vet school. :) We had a cat with an NG tube in last week and it got clogged. Knowing how to unclog an NJ tube or long GJ tube (my first two types of tubes) came in handy that day :)
Jose R ok so there is this formula called pediasure and they come in flavors like chocolate strawberry and vanilla and there is this I guess you can say cup looking this that you can measure with millimeters and you open the tube up and you connect the cup looking thing to it and the formula goes thru the tube too the stomach and plus you add a little water before you take off the cup looking thing and it pretty much fills you up and the formula is also good to drink it's high in fiber and that's what a g tube does any other questions you have feel free to ask me any time 😊😉
I have a button as well, this was so cool. I am currently trying to get a spare mic-key in case I need to replace mine. I have not been shown or "allowed" to change my own yet and I have not been instructed to check the balloon volume, which sucks. I prefer being empowered to do my own stuff rather than worry about being somewhere I cannot reach a hospital quickly in case I need to. This is so helpful in learning as much as possible just in case I need it :) thanks for sharing!
This is very brave of you to post this. This will help a lot of people with these tubes!! I eat through a G-Tube just like you. Its a MIC-KEY button that I have. Thank you soo much for posting this.
My 6yr old little girl will be having this placed April 25 and im a Certified Surgical Technologist in L&D (so you think this wouldn't bother me buttt it's my baby) and I was so scared for her but watching your videos has eased my mind that its not so bad or scary at all. She will still be able to eat, like you, but she's so small due to a genetic disability called Kleefstra Syndrome Type 2. We've been stuck at 39lbs for 3 yrs. She's cognitively 6 (my lil fire cracker 🤣). Thank you for sharing your story!
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We conquered another new medical procedure! What was YOUR victory today? Good morning at work? Successful day at school? Leave your victorious moment in the comments! Keep up the good work, friends!
The Frey Life I finally found the right medication for my exercise induced asthma
I was able to get some stuff done around
the house (including finally figuring out what was causing the mysterious puddle in my bathroom) despite not feeling great.
The Frey Life I managed to go to school even though my symptons were pretty bad.
I found my way to all my classes without getting lost
The Frey Life me being awake fore 15 hours strait is a victory for me but i hade fun day
I'm a nursing student and the reason the procedure is not sterile is because you GI tract is not sterile unlike your blood. I love watching you guys. I've learned so much information that helps me make connections when I go over it in class.
Same here! I am a nursing student and I've got clinicals/placement at the paediatric hospital and apparently the ward I'll be on has a lot of children with cystic fibrosis, I've definitely learnt a lot from her channel
+Kaydi B if you think about it, your GI tract is actually external to the rest of what's inside the body (organs, tissues, bones etc.). Since it starts from the oral cavity and ends with the anus it's just like a pipe with valves ( or you could pretty much tie a rope-that has gone through the mouth and come out of the anus- in a knot; as gross as that sounds) so that's why it's not sterile like the cardiovascular/circulatory system for example, which basically self regulating and cleaning. Still you want to minimise any possible risk of infection of course :P
I totally got through nursing school with TH-cam! Lol. My diploma should say TH-cam University
Hind R I
Thank you so much for posting this. My daughter has a Gtube and we are going to change her button for the first time today at home. This really helped her and me in so many different ways. THANK YOU!!!! It was a great review for me and helped show my 7.5 year old "that I don't need to be scared." Bless you both.
PS. My daughter has blood sugar issues too, so it was awesome for her to see someone else needing to stop and eat.
My victory for today was smiling and laughing with my students. I was having a hard day and ended up having a breakdown on my lunch after a few REALLY hard days. Once my co-worker was able to help me talk through my emotions, listen, and pray together, I somehow found my smile again. Today, smiling felt like a victory because I feel like I have had fake smiles since about Sunday. Fake it til you make it.
I had a button when I was a child due to severe gastrointestinal issues, this brought back memories. Seeing you conquer your health problems and overall live a normal happy life gives me so much happiness. Keep on going strong, sister!
Hey, my names Aimee and I’m 12. In April 2016 I was having pain in my right leg. I went to hospital and they did tons of tests. A CT scan, many X-rays, MRI scan, a bone scan which I had to have a cannula, a blood test and so many more. They was unsure what it was, they didn’t know if it was cancer. They actually thought it was Cystic Fibrosis. After a year, (I was 11) they told me that it was a Nonossifying Fibroma. To this day, I still am unable to do PE sometimes (mainly hockey and rock climbing) and long , uphill walking, but I’m back to my regular health again. Since then, after almost two years I have come so far. I’ve turned 12, experienced some horrible tests and appointments, suffered with anxiety worse then ever, made new friends and had new experiences. You have really inspired me, Thankyou.
Cool story
Yeah uhm I have cf and also a non ossifying fibroma and I can tell you now they didn’t think your bone birth mark was cf. I think ur lying bb :)
Dairy Milkers I’m proud of you
Literally the sweetest, and most gorgeous couple ever!!!!! How can two people be so perfect for eachother!!!!❤❤❤❤❤
#realtionshipgoals.. I want to be best friends liek that..
Mary, you need to add some protein to your snacks when your glucose drops. If you just eat sugar, it will raise and crash again. You need about 15 grams of carbs (the sugar) and just a little protein to keep things on an even keel. Try a little peanut or almond butter, a few bites of beef jerky, a piece of two of deli meat wrapped up with a bite of cheese. Things like that. It really does help!
Yes peanut butter is good for longer term stability than just sugary foods.
elderberry44 are you a dr etc?
+GothicaBeauty doesnt matter if their a dr or not their right.. im a type one diabetic and that’s exactly what your supposed to do..
Jayden Loka I’m type 2 & have been for the best part of 20yrs so also know what I’m talking about.
Looks like she probably fixed that problem by now. I think she now has a Dexcom G6 like me. They are doooope!
My victory was that I had a panic attack in school, but I controlled the situation. I did pass out and was sick, but an ambulance was not called! I woke up and calmed down enough to walk! Big achievement for me, it often goes a lot worse! Love and hugs from Scotland, Jenny xx
I love how he’s sooo supportive 🥺
My heart is with y’all. I will keep you guys in my prayers. My mom passed due to a brain tumor. To show what you go threw on a daily basis is so inspiring. Thank you for sharing with us.
I have a friend with twins born at 24 weeks and to teach their older child about the twins ventilators, and trachs, and everything else they used baby dolls and hooked them up just like the twins. Great teaching tool!
You are the most remarkable young lady...I avoided my feeding tube so far, and been many years, but this now does not scare me, I am 65 years old with barrettes decease and my esophagus is going, you honey have made me not so afraid and I bless you for that.
My 11 yr old daughter just got her mini button 6 months and will be changing it for the first time next week. We are so thankful for your channel. You put her anxiety at ease. Before she got her button her gi dr gave her a teddy bear with a gtube in it :). And she has a scar under her Belly button like my daughter
life with cfer vivi I have a g j I have to do it in the hospital in the e r
life with cfer vivi
life with cfer vivi
Cool
My sister has a mini button. She is premature by a month or 2. She was 2 pounds and a few ounces. She nearly died. But was saved by prayers and the medical treatment! She still has it she's 13 and people always ask what it is but she says something like a belly button. Her used to be friend said ewww that's disgusting. I fired back
KT i dont blame u for firing back. i would have done the same thing. some people can be very insensitive. so glad ur sister is doing well
😢my wife had to get a feeding tube put in last month it is good to see you showing us we can still have an active life.
I have one to
it funny how fast you can change a feeding tube. my 5 yr pulls her out and laughs every time as she tells me if feels like a fart coming out of her tummy. lol She is going into kindergarten and pulled up her dress and told the teacher that she fart thru her tummy.
LOL Sounds like an amazing little girl! :)
Vikki Daniels LOL!! 😁 I agree she sounds like an amazing girl!! I hope school goes great for her!!
So cute. I'm a pediatric nurse and had 2 pts that are twins and they would pull out each other's tubes thinking it was the funniest thing ever! While fully inflated, I would think it was slightly painful.
Vikki Daniels maybe teach her tack and dignity. Not every child in her class is going to understand and you can not expect them to. Correct that! No 5 year old should EVERRR be lifting her dress for adults. Talk to her xo
So cutee sidjsjnd
Thank you for everything you do. My stepdaughter has so many health issues, and she loves you guys. I’m glad she found you!
When I first started wearing an insulin pump I was given straight and angled infusion sets. The angled ones were really painful for me to wear, so I put the rest of them in a bunch of different stuffed animals. I loved doing surgeries (sewing holes) and making casts (out of gauze pads) for my stuffed animals. It was cool having a real medical device that I could use on my toys when I played doctor.
I’m a support worker and one of my clients had a peg for the first 3.5 years I worked with her. She had challenging behaviours and everyday she would pull her peg out at least once so I basically became a pro at putting it back in! It’s honestly the easier thing to do!
My baby sister Who is 4 months has a feeding tube, I’m glad to see someone else with one to!
Very informative yet very graphic. Not judging. I love his love for you. That's a special man!!!! He has to be the kindest man ever
That turtle is adorable. There is a company that gets stuffed animals from build a bear and makes a customized stuffed animal for a particular person. They are called tubie friends and you can get almost anything that you have in or on you. Like a port and the feeding tube. I have a stuffed cat that has the same catheter I have and a feeding tube along with a PICC line, oxygen, heart monitor leads, a sticky pulse ox, a knee splint from when I had surgery as a teenager. I just made him myself. Got a lot of supplies from my house and found others either at the hospital during an admission and eBay. One thing you might want to consider is inflating the balloon with air just incase it bursts. For the catheter and the feeding tube I got some thread the same color as the animal and sewed them in place because they kept falling out when the balloons inevitably lost their air.
Be well sweet girl.
May you feel 100% better and please be safe in this chaos right now!!!!!!!❤️
cool!...hey, sweet Mary, my endocrinologist told me not to eat solids for low blood sugar any more, he says fruit juice is faster because your body doesn't have to spend so much time breaking it down...
IMChrysalis A crew of paramedics got me to eat a few biscuits once but it kept going down for me. So I say there swishing squash/juice round my mouth and then drinking it over and over again until it finally went to normal lol. They said that the gums can absorb it quicker or something so it helps blood sugara? So weird!
when I can feel mine going down but I'm not dizzy or anything yet I eat candy too and I'm fine for me juice or soda doesn't have enough sugar at least alone to bring it where it needs to be so it'll bring it up a bit quick but it'll still fall again and I've been told it's only for when you can't quite wait for food or to at least give you enough power to eat something if you're about to pass out..cfrd is much different than regular type 1/2 diabetes and even then every case is different so what works for one may not work for all
This was so cool! I loved how you put the other feeding tube in a stuffed animal. That is something you can perhaps share with your team for children to help them feel like they have a companion with them.
I have a bear named Terry, he has a PICCline in one arm , an IV in the other arm, a hospital band on his foot, and an NJ tube in his nose. In a week I'm having a GJ tube and port placed so he will get a Port and GJ tube. Little stuffed animals always make it more fun :)
Life with Stripes do you still have tpn? how long have you had it? im on feeding tube but not tolerating it well at all.
Brandi Redding I've actually never been on TPN. I had a PICC line and port for IV fluids
Life with Stripes wow I have ruffis the diabetic bear with patches were the needle goes.
Life with Stripes sexdi
Thank you so much for posting this! I am a first year nursing student and being able to learn, not only through textbooks but through watching videos like this helps me learn so much more. Again, thank you so much! It’s greatly appreciated 😊
What a beautiful couple. I hope to be happy and healthy for ever !! Love from Greece
Thanks for this! I had a GJ tube before, which was horrendous (I, more than once, threw up the end that SHOULD HAVE BEEN IN MY JEJUNUM, and then either had to swallow it while not choking to death, or yank from my stoma (gastric stomas, are just…not super, if you have stomach problems), and frequently just had to live with a punctured balloon (thank you for showing the balloon outside the body, I now understand why the poor balloon kept dying)), and now I’m going in for a jejunostomy for them to put in a J-tube, and I knew you’d had one, Mary, so here I am.
(Thank you for making it look easy. 😊)
💚Sasha
I just changed my little boy's g-tube (he's 2), and he was so good for it! I'm glad to know that it doesn't hurt. He has a little bear stuffed animal with a feeding tube. We got it from the tubie friends website :)
I had watched this when it came out, but came back tonight because I just found out a long term friend on mine with CF just got his and wanted to refresh my memory. I am so happy for him, it seems he is doing really well after years of watching him battle with food, cognition, weight etc. Poor dears
When you laugh at yourself, it gets rid of any power that a bully puts over you.
You are a great example of strenght for all of us.
You two are adorable! I love how you two are a team.
The feeding tube for the stuffed turtle 🐢 animal is such a good idea 😊 that will help other people who have to have a feeding tube. Love you guys ❤️👍🏻
Thanks for sharing and teaching us. I learn a lot of stuff from you... you're basically a teacher/doctor now. 👍🏼😉
Mary, YOU are absolutely delightful, yourself! No matter how your days are going, you always have a smile on your face! I just found your channel the other day and I can't stop watching your Vlogs! You, Peter and Ollie make a DELIGHTFUL team!
"Do what you think you can't do"!
This is great, my little has a AMT mini too, love the awareness! It is nerve wracking and she giggles at the air release.
I know this video is 2 years old so you most likely will never see this but just in case I wanted to say Thank you for sharing this. My daughter has mitochondrial disease and our Dr’s are recommending a GTube and we have been so nervous. This calmed a lot of my nerves!! So thank you!!
Mary, I wish you would see an endocrinologist for your blood sugar problems. I worry when you eat candy to get your blood sugar up. We know in "normal" people foods like candy cause the blood sugar to spike followed by a crash. There are better foods that can give a more stable and sustained blood sugar elevation. 🙏🏻💜
20g of carbs or a glass of OJ is good for raising your BS for a sustained amount of time. Candy will temporarily increase it and then result in a crash.
JustJennie I mean candy works as well as anything else.
I'm so glad I saw your video. I used to change my son's button but because he was non verbal I never knew how it felt.
If he could get his hands on it he would pop it out with the balloon still inflated. He only ever did it on school days! Even kids with disabilities like to skip school!!
We put a button in a teddy bear too. It was a great way to show other kids how it worked and he loved his bear that had a matching tummy.
We were blessed to have him with us for 5 1/2 years.
Thank you for sharing your journey!!
I changed my sons gtube yesterday. It's different than yours and doesn't have a balloon. It was quite the medical procedure but we got it done! 👍🏼
All I can say to this is thank you! I stumbled across this video and your channel completely at random. With spooky timing. I'm a final year nursing student and my last lecture was based on alternative methods of feeding including feeding tubes (NGs) and ones similar to yours now. Thank you for sharing your life experiences and helping to put theory into a more 'practical' scenario
Simple
I LOVE HER ATTITUDE.
Maybe my guts will fall out. Lol
It’s funny I do construction and people act like life is over if there roof leaks or toilet doesn’t work.
But yet you have a good attitude and make life what you want.
Hands down. I hope in some way somehow things get better or more easy or whatever for you.
Thank you, a wonderful video of fun and instruction. I too have a Mic-Key button and your video was a great help for me to overcome my nervousness about changing it myself at home. But, also I knew it was not that hard and can be easily changed at home as you have shown. I probably would have just got it changed at the hospital where it was put in but it is an hour's drive both ways so this is a much better alternative. There is a neighbor lady a couple doors down who was a pediatric nurse but was never exposed to the Mic-Key button. I think because she mostly ended up on the road being a teacher to other nurses and it didn't cover this area. Anyway, She never did any Mic-Key buttons but knew someone with a child that has one and learned more about them from her and she watched this video on the internet before she came over to learn more about them so she agreed to help me change it. So actually she pulled it out and put the other one in and I filled the balloon inside with the amount of water called for.
That was the first time.
Five months had passed so she came over again recently, 6/21/24 just to stand by in case I needed help.
So this time I changed it by myself.
It went well.
So I took the old Mic-Key Button balloon retainer water out, removed the old Mic-Key Button, and slowly and steadily pushed the new one in but the odd part is at least for me is I felt a bit of resistance and then it goes through my outer skin layer and I pushed some more and I felt resistance from my stomach, and then it goes through my stomach in the rest of the way sort of like a bump through my outer skin layer and then a bump through my stomach and then I put the balloon retaining water in and I was done.
I figure this bit of resistance I am encountering is actually good because it indicates it is snug and that is probably why it does not leak and barely seeps at all.
Thank you Frey's, you can be sure your videos are helping people, they helped me, thanks so much, Take Care, and God Bless Russ
"It is stained yellow from the stomach juices" *giggles* you are such a bright soul I don't have CF but I subscribed because who doesn't love people with positive vibes! God bless
You two are the sweetest young people I’ve ever had the privilege of watching
When I was being trained on how to feed a patient with a feeding tube we had a babydoll with a feeding tube in it we used to go through the motions of connecting it
I am sure every nursing student that watch your videos love your videos, thank you so much for sharing and giving us the opportunity to further our understanding!
“Maybe you have a feeding tube or your just curious” no I’m bored😂
But I actually rly enjoyed this video
She has cystic fibrosis it says it in the video
This helped me with my son who now has his button. Scared me to change out myself. Now I’m more confident.
I think medical device/procedure dolls like that are probably pretty common in hospitals that deal with kids. When I was a baby and diagnosed with retinoblastoma, one of the first things they told my mom was to get me a 'hospital doll' they could use to show me all the procedures on before they did them to me. Once I got older they ever gave me a little 'eye exam doctor's kit' with a mask for anaesthesia and empty eye drop bottles. I named the doll Charlie and I still bring her to the doctors actually, despite now being in my 20s, haha
You two are awesome! Your positive attitude is so contagious, you made me smile throughout your video. This is what a relationship is all about...support, guidance, having fun and impacting others around you while doing it! This is true love!
You need to make a doll or stuffed animal with a feeding tube and port for your nephew. Your mom should make it a chest vest ❤️. My son has a bear with a feeding tube, trach, and port I placed and a wheelchair from build a bear. I need to make it a chest vest and a nebulizer mask. It helps other kids that come to visit understand Michael a little easier. ❤️ (I cut the needle out of a port access needle and just sewed the top part down really really well so it looks like he's accessed) 😊 a little Stuffed Ollie would be awesome to go with it ❤️
Bobbi Hammett iT helps when you thel kids about iT i thought about iT to
Bobbi Hammett such great ideas!!!
Bobbi Hammett what a great idea!!!
Yes I remember watching a doco about 2 little Irish girls that were Siamese twins. They where preparing them to be divided. They were about 2 or 3 from memory and they wanted to tell and show the girls what was about to happen to them. They used a couple of Cabbage Patch Kids and joined them
together the same way they were joined together but with Velcro. Then they would tell them about the babies being seperated just like them. They gave each one the same names as the girls and they were blond, blue eyed with curly hair, just like the girls. When they pulled the dolls apart they showed
I’m about to get a low profile feeding tube tomorrow. I’ve had the normal kind but they keep coming out. I’m glad to see this video. I know it’s 4 years old but I really hope you’re just as vibrant and wonderful 💙
This was so very interesting! Good job Mary! And you explain everything so well. It makes feeding tubes seem not so "scary" :-) this will help so many out there. I thought it was so funny seeing the big smile on the turtles face when Mary was putting in his feeding tube, this should be shared to all the children's hospitals to the kids who have to get a feeding tube. You guys are the best! Love and hugs to the 3 of you, see you tomorrow!
Saw your video and it gave me the confidence to order a replacement for mine. If you can't believe it I am at around 22 months since my last replacement! I was dreading going to radiology when I knew it wasn't that hard to do. Hopefully I won't regret it but I think it's pretty straightforward.
Thank you so much! You made this so much easier with less stress.
One of life's magical moments....how blessed to celebrate this milestone....💕🙏
So glad to hear about the new addition to your family!!!!
Say hi to the new guy for me.
Nice to meet you "Tommy, The Feeding Tube Turtle"
I gotta say, he looks more like his momma!
LOL!
we Love how you guys always take the mundane everyday issues of chronic disease, and turn them into something fun and exciting. Which is giving me a chance to try it myself.
Hi😍😍
I've had a gtube for going on like 3 years. I recommend saving the gtube guide (blue stick) it's a nice helper putting in new tubes and they don't always come with one. And when your changing them that's the best time to get a good cleaning of the area when it's out. Don't worry it won't close up for quite a while so you have plenty of time to clean and take you time
Ive changed my feeding before where it was changed & I guess I had air in my stomach so when i coughed or laughed my stomach literally made a farting sound!! Was embarrassing but whatever :) Im totally gonna boil my old feeding tube & put it in a stuffed animal. I always wanted to do that but didnt know how!! Thanks how I first learned about the feeding tubr when I was younger. A doll had one. (:
Omg mine does that too! Sometimes if I’m sick or something I’ll be laying down and turn and it will make a farting noise 😂
My brother had a feeding tube and the hospital actually made him this stuffed animal with the feeding tube in it and I was 3 years old at the time and I thought it was the coolest thing ever. My brother got better but spent years with the tube in but eventually was removed and is doing well now. It's really neat seeing someone else who has one too and to know that you're not the only one out there.
I had a G-tube (Mickey button) from around 2 years old but got it taken out permanently around 4 months after my 15th birthday! I was on continuous feed over night as I have a rare liver disorder. It's called Glycogen Storage Disease (I much prefer to say Glycogen Storage Disorder, sounds a bit nicer than "disease"😂) I have type 3! It's a genetic disorder, it's caused by a deficiency of the glycogen debranching enzyme, this causes a buildup of glycogen which impairs the function of certain organs (all patients differ) especially the liver, muscles and heart. It affect 1 in 10,000 births.
As I have a efficiency in the glycogen debranching enzyme my liver can't regulate my blood sugar levels, this is why I was on continuous night feed. I watched the part where you said the sugary sweets didn't bring them up, I struggle with finding this to keep my sugars at all normal level, I use 2 tablespoons of raw cornstarch (called cornflour in the UK) at night mixed(HAS TO BE RAW!) with 100ml of milk! You can't put something with high sugar into it because as my doctor explained it begins to "cook". Cornstarch is a slow release sugar and it's honestly AMAZING! I've started using it in the day and it's a life saver! Of course I'd suggest seeking medical advice if you were thinking of using it. It's what a lot of people with GSD use into as treatment and it's can be found in any local supermarket!
Sioned And Billie I HAVE ONE TOO 🤣🤣🤣
My 3 year old godson has been through this process for his whole life and now has a G-tube and a J-tube. And I've never seen his go in. So glad I came across this video! Thank you for sharing!
Oooh, Mary! You should put the old button in a stuffed animal, like you said, and give it to ...is it Lily? You know, the daughter of your friend who trained Ollie? I bet she would LOVE that!
She did
Thank you so much for this video, I'm getting my G/J in the next few weeks and this really helps. I knew literally nothing about feeding tubes before this week, so it was a bit overwhelming when the topic first arose. 🙂 It's reassuring to see how simple this actually is, and it looks like much less of a hassle compared to the port. I admittedly still don't have a clue about how the feeding works yet or what bolus (?) is... but at least now I have a general idea of what they'll be putting inside of me. ☺️ Thanks again!
💕love you and your positivity.
Yes me too 😘 love yall
I feel honoured that you share all your first moments, that should be just you guys know about, since it's your first time it can be scary or make you anxious.
I'm laying in bed watching this video with my sleeping husband next to me. It took everything I have not to start laughing out loud when you were performing surgery on Tommy the Turtle. So funny. Ollie isn't to happy about it though. Poor Ollie.
Great to show people, my son used to have a peg tube which I could change In a few minutes, now he has a jejunostomy tube and it's so much hassle to get changed because hardly anyone uses it these days. Hope you have a great Christmas 🤶 x
I was more nervous watching than you guys were actually doing it. Mary, you rock! Glad the tube change went well. Your stoma looked lovely, BTW 😊👍🏼💜
This is so amazing to me how great you are at handling all your health care procedures at home, This was a great video, thank you for sharing,
8:15 her face is turning red! that was interesting to watch
You 2 are so awesome. I'm a Diabetic also, the way you look at life has helped me so much. Thank you for your videos.
I made my daughter a G tube buddy using a Build a Bear because you can open the back then sew them back up.
Trekkifulshay www.tubiefriends.org makes and sends them for free ♡
My niece has a feeding tube also, this video was cool to watch and see other people have a button too!
"Don't worry we gave him anesthesia." Lol 😆
I have Cystic Fibrosis and I was so close to getting a feeding tube. I was so scared lol. You are so strong!
I think that rice is Japanese inspired, but it's grown in California. I love those rice cookers. We have one. I'm half Vietnamese so a rice cooker is a must. Lol.
I just see this video of you and husband, I must say that you guys are amazing.
God bless you young lady. Thank you for being the way you are. Love always Andy
I’m so curious, how does it not accidentally fall out for example when you sleep or if you was to accidentally get it caught while changing clothes?
emilymsymons it's because the balloon is filled up pretty much and it takes a lot of force to pull the balloons out. I work in a nursing home and I've caught the feeding tubes on clothes before and they've never come out before. It takes a lot of force.
She inflated a ballon at the end of the PEG tube with water and that helps it stay in place
I had a feeding button for most of my life, I give props for you changing it yourself because I was so sensitive and protective of the area... it gives such a weird sensation.
What did your sugar drop to?? How low did you go?
I don't know where you guys live, but in Louisiana, rice pots are in all homes.. I moved to Texas in 1995, and there were none available. Nobody sold them here. My wife's friend paid for ours, and we bought her one. And they last for a long time!!!, ty for the video, It will help those who have to do the same thing.
Awww Tubie Tommy 💜there is a company non profit that's called Tubie Friends, where they put button gtubes into stuff animals and give them to feeding tube children .....my son was given one by some pirates when he was in the hospital ☺
i work as a teacher aide in a class where four of our students use the feeding buttons and i'm waiting for my training to change them but i was so worried about it until this video !! when i first fed one of them through their tube my hands were shaking and i thought i was going to hurt her lol but she fell asleep halfway through. after seeing this i can't wait to take my training so i can better support my students
“Get some sugar in that girl” 😂😂😂
Not sure, how I stumbled upon this video. It was an eye opener for me.
Thanks for posting it.
Funny story about tubes, I've got a Mickey G tube and a Mickey J tube. About a month ago my g-tube button fell out and I did't have a spare at home. The button was ancient, as in 9 months old I thnk...(I kept ignoring it since I've never once had one fall out in 6 years of having tubes so I changed them every 3-6 months). I didn't want to go to the ER so ran to my ER (I'm an emergency DVM). I called ahead and asked one of our techs to see i we had a 20 fr foley (urinry catheter) and she said no. I swore we did so I walked in to the clinic and eveyrone was freaking out I was there since I was home sick due to having caught Tularemia from a patient. I showed them my G-tube and said I didn't want to go the ER. Only one person in the room know what I was holding up. I grab some sterile lube, dig through out catheter area to find what I want, go to the bathroom and put in the u-cath. The owner of our clinic was so confused when I walked out with it hanging down. Moral of the story always have a back up tube. Now I have a new button in and a back up at home. I get a new J tube put in Monday but have to have IR do it since I have a 45cm tail on it as I have reverse motility so I have to have the formula and meds be down far into my jejunum otherwise it just goes back into my stomach.
Brittney Riley does the hole close
It did not close in that time frame. It would have if I didn't get the foley in there w/in 2-4 hours. I did not mention in my story my DME didn't get my replacement by the next morning and I had a bad vomiting spell.The internal balloon ruptured on the foley and the tube fell out when I was sleeping so I woke up with no tube in me. Thankfully I put the tube in the hole to keep it over and taped it in place waiting for fed-ex to bring me new tubes! Life as a Tubie is an adventure LOL
Brittney Riley Good thinking to at least stick Some thing in iT this you got the tube again
Brittney Riley oh goodness!!!! Life is full of these "wonderful" stories for us chronically ill!! Good thing you are very resourceful!! 😁
I had my first port and feeding tube placed when I was 9 months away from finishing vet school. :) We had a cat with an NG tube in last week and it got clogged. Knowing how to unclog an NJ tube or long GJ tube (my first two types of tubes) came in handy that day :)
God bless you all! I cry cause of my everday issues. alcoholic Here! i just wanted to tell u that i adore everything ur going through!😥
What does a feeding tube button do someone explain it to me plz?
Jose R ok so there is this formula called pediasure and they come in flavors like chocolate strawberry and vanilla and there is this I guess you can say cup looking this that you can measure with millimeters and you open the tube up and you connect the cup looking thing to it and the formula goes thru the tube too the stomach and plus you add a little water before you take off the cup looking thing and it pretty much fills you up and the formula is also good to drink it's high in fiber and that's what a g tube does any other questions you have feel free to ask me any time 😊😉
Jose R I just explained to you if you see my reply. Feel free to ask questions anytime
Jose R I just explained please reply back with any questions
Thank u for explaining it to me don't call me Jose R I'm using my dads account lol call me savi thx again
Jose R any questions feel free to ask
I have a button as well, this was so cool. I am currently trying to get a spare mic-key in case I need to replace mine. I have not been shown or "allowed" to change my own yet and I have not been instructed to check the balloon volume, which sucks. I prefer being empowered to do my own stuff rather than worry about being somewhere I cannot reach a hospital quickly in case I need to. This is so helpful in learning as much as possible just in case I need it :) thanks for sharing!
This is very brave of you to post this. This will help a lot of people with these tubes!! I eat through a G-Tube just like you. Its a MIC-KEY button that I have. Thank you soo much for posting this.
I have a feeling tube in my tommy it’s for my mezzanine
you are so brave and courageous, you both are such a joy to see working together, best of luck always and thanks for your video
8:01 I had to stop the video, I seriously felt like I was going to pass out. You are so brave! God bless! 😚🤗
My goats name is Oliver! (Ollie)
Thank you for making my transition to having a feeding tube easier! You’re a rockstar!!! ❤️
My 6yr old little girl will be having this placed April 25 and im a Certified Surgical Technologist in L&D (so you think this wouldn't bother me buttt it's my baby) and I was so scared for her but watching your videos has eased my mind that its not so bad or scary at all. She will still be able to eat, like you, but she's so small due to a genetic disability called Kleefstra Syndrome Type 2. We've been stuck at 39lbs for 3 yrs. She's cognitively 6 (my lil fire cracker 🤣). Thank you for sharing your story!