So J tubes can never be changed at home; that's only a thing for the shorter G tubes that terminate in the stomach rather than snaking down into the small intestine. Jejunal tubes-whether they are surgical J tubes, transgastric J tubes, GJ tubes, or NJ tubes-all get changed by a doctor. Depending on the hospital, those changes may be done by an endoscopist under fluoroscopic guidance and endoscope visualization, by an interventional radiologist (again with placement confirmed radiologically), or by a surgeon with placement confirmation performed after the procedure in a separate department of the hospital. The common theme there is that you really can't know a J tube is correctly in place without either an endoscope to see directly or radiologic confirmation (they have a radiopaque strip). In extremely rare cases (and sometimes against doctors' recommendations), patients who have very established surgical J tracts are able to change them out at home, especially if they are using a button or tube with very little "tail" to worry about.
Heather Rottenberg I can change mine at home, but that's because my J tube has no tail. It just goes directly into my small intestine. My doctor uses g-tubes even for his j-tube placements. But yeah, if it has a tail ya need to have a doctor do it. They don't usually need to use anesthesia for tube changes. It's uncomfortable, but not too bad.
My grandson had g-tube a few days after he was born until age 9. It was a life saver. Love you got o enjoy the outdoors for a while on your porch. Your dinner looked amazing. You and Peter are a great couple.
I just love you guys! I see God working through you and your Vlog. I watch you about everyday and then take a moment to pray for you both. Thank you for sharing with the world.
Hope your GJ placement goes well for you and it turns out to be the best option. I have had my NJ in for awhile now and get my GJ placed March 16th. I can't wait!
+jessie scribbles Thank you! I have had such trouble with my NJ tube. Had to get it replaced 3 different times in the first week so I'm hoping the GJ gives me less problems.
Love Marys sense of humor. I find their cooking recipes relaxation. please post more recipes providing. Mary is up to it. Good luck with feeding. tube.
You got this girl! I have a J tube and would be happy to answer any questions. Make sure you get some cute tubie pads! They are fun and will keep your tube site more comfortable than gauze does. I got mine from SewKnotLoopy on Etsy.
I meet a C.F. family in the hospital that loves you. My son is on the same floor different sides. They love you so you have more fans than me in good ole TN.. Glad to hear good news about possible tubes..
Hey Mary, This is totally off any subject you have talked about but you can have your wedding rings soldered together. I did this. They use a little white gold or gold depending on what your rings are made with between them and they don't move or turn on you. Just a thought.
hey mary and peter (and ollie🐾)! i only subscribed a few weeks ago but your videos have already become the highlight of my day. it's so affirming and comforting to see how much you care for each other and how you take time every day to enjoy things together. thank you for doing what you do!! hoping the tube placement goes super smoothly! also that dinner looks sooo good 😋
I have a g-tube. I had no problems or pain with getting mine. I'm unable to eat by mouth so all of my medications and nutrition go through the tube. Praying that your procedure goes as smoothly as mine.
Hi Mary and Peter! I have follow you for a couple of years now and you you guys are so awesome. I want to tell you ab little bit about me and who I am. I have a terminal disease called SMA type 2 and I have a tracheostomhy and a ventilator helping me to breathe 24/7 and I have a g-tube for my nutrison 12 h a day. I have had g-tube feeding for 3 years now and it´s hard some times but I´m glad that I made that decision to have one. I change mine at home after 8 weeks and it`s very easy. When you have tracheosstmhy you cough a lot and get a lot of moucus in your trhroat and in your lungs so I have a suction machine and a cough assist machine to helping me cleaning mthroat, mouth and lungs and helping me to cough a little bit harder. I watching your videos every night before I goes to sleep and love your service dog Oliver he´s so cute. My husband ana I lives in the north of Sweden in a small town called Boden with our dog Billy and my stephson and they are my caregivers too. Feel free to ask questions about everything you want My english is not so good in writning but I hoe you understand the mot part of it but if you did´nt pleaase let me know
I just found out today that I am a carrier of CF. I am also 18 weeks pregnant so my hubby is getting tested next week. I want to thank you Mary for sharing your story with the world I never knew anything about CF until I found you. That is the only reason I even got tested. Even if my husband test positive for being a carrier I will have more knowledge and confidence to take care of my wonderful little bundle of joy from watching you and Peter! :D
sharolette ogden I was found to be a CF carrier too while pregnant. I'm happy they're testing your husband! My doctor wanted to jump straight to amniocentesis.
I would go with the GJ. but would you get one stoma or get seperate sites. I got a permanite g when you go into sugary bring pillows it helps. but also it may be scary at first but its definitly worth it. it took me a while to recover because i had some comlucations i got it done endoscopicly then had to have a laposcopic surgary. praying for comfort.
My son was in the same situation, re: enlarged spleen and difficulty with a peg placement. Initially he had a peg abs changed it to the pej which he found more tolerable. Praise god since his liver/pancreas transplant, his spleen has shrunk back significantly and now that he doesn't have any pancreatic insufficiency, he have the entire pej removed.
My daughter has a Micky Button and it has been the best thing she is doing so so much better than she did with out it. You guys are always in my prayers
I'm happy you are getting a food tube. My first husband, when he was dying with terminal cancer, had a feeding tube put into his stomach. They put it down his throat into his stomach then made the hole and inflated the balloon. The tube was amazing! He put weight back on and whatever our son and I were eating he could have. We just blended it in the blender with milk or water. I think you will do amazing on the tube! Good luck!
You need to go on etsy and buy lots of g tube pads. You'll need them before your tube is placed. Gauze and tape leads to infection. The pads come in any cute design you want! They let the stoma breathe but catch any leakage if you have any. I have some new ones I can send you. Buy bamboo! Any other material doesn't clean well or last long. Bamboo washes right out and never stains. You'll also want to buy tube wraps for where the extention connects. I can send you those too if you want. It keeps the med port from popping open and leaking everywhere. They are lovely accessories too. Oh, buy some calmoseptine! I can send some of that too, I bought in bulk. It keeps your tube from getting irritated and keeps away granulation tissue. As for sedation, they can just put some benadryl into your IV. It does the trick! My last two surgeries, that's what I used because I have problems with sedation as well. Let's talk!
Mary, I am so glad you get to have a permanent GJ tube placed! Now your body will get the fuel it needs to help you fight. Just FYI, you are not supposed to lock the lid on during cooking; only there for transporting.
Mary, have you heard about the new vest? Our sons RT came by yesterday and told us about it. It's called Afflovest. My son has a g-tube and it is wonderful.
So excited for your new tube possibility. I know with the tube you were having a difficult time but you looked like you had so much more energy. Dinner looks yummy!
I've had a Gtube since i was a baby and about a year ago i got it taken out because i started gaining enough weight on my own. but the years i had the tube feedings help so much with my weight.
I recommend a MIC-key button Mary! my 2 year old has one and it's a life saver with no discomfort! if you can do your port, the button will be a walk in the park. also, ask about getting a fundoplication. not sure on spelling, but it will keep you from throwing up. your always in my prayers! good luck!
Jade just got her g tube and the recovery is easy. Obviously it's different for everyone but it is very mild pain. She was sitting up on her own the same day. :) so excited you're getting something permanent. Can't wait for your nutrition to improve. You'll feel so amazing 💕
And you're correct, everyone's recovery is different. A lot of people can be in and out of the hospital the same day, or just stay one night. I was there on pain meds for 9 days, stayed in my house for about 2 additional weeks, didn't really get back to myself for about 6 weeks. However, apparently, once they got in there, they realized my stomach is structured weird, and they hit a nerve. Hope for the best, but be prepared for potential issues. They often don't know what they're getting into until they're doing the procedure. I wish you the very best!
Mary and Peter I salute you for all you do for each other and how positive and strong you are as a couple you inspire us all. I didn't think I was even going to graduate due to finally being diagnosed with Behçet's disease (ulceration throughout my body) but I am now studying to be a veterinarian and it is a great deal due to your positivity and sharing your story with us. You guys gave me hope when I thought there was none and my friends and even my own teachers bullied me for not being able to come to school sometimes. It got to the point where one teacher in particular would pretend I was invisible in class and find it funny and consistently tell me that my disease was all in my head despite hospital visits and doctors letters. You helped me laugh and realise I wasn't abnormal 😂 and that I could do more than I thought. Thank you so much Frey life I wish you all the best in your journey
For a second I thought you were on a boat! Then I realized that sound was your vest and that your vest wasn't in fact a life jacket! Also, my cat was legitimately watching this video with me! I've been binge watching all of your guys' videos for about the last 2 weeks since I just found you!
I had my first tube placed vie an EGD. It was a GJ. It worked pretty well but did displace quite a bit. Hopefully the new tube type works as he says. Good luck! The GJ tube recovery was way easier than the J. :)
I feel that you have gone through enough with the nj tube. I hope the new tube will be more user friendly and far less disruptive in your life. Sending a hug and prayers.
I've had several, and the g/j is the BEST! It's useful for so many reasons! If you feel like you're gonna barf, you can vent it out the G portion too. You can also get an extention where the tube is way long and it doesn't curl back up when vomiting. I have mine and can show you....they let me keep it after removal. Ew. Lol. You are right, you won't have surgery...just a procedure. The tube goes down your nose, btw. I was actually awake during mine. It's all good. Do it! As for where it will be, it will be right below your last rib. Depends on where your stomach lies but yes, right under last rib and directly straight down from your breast.
My 7 year old has a GJ it's been good but the risk of the J coiling back into the stomach but she's too tiny for the anti-coil ones. While some of it sucks the benefits outweigh the risks.
Mary, your outfit is super cute:) Can you and Peter come be my personal chef😂. everything you make looks so good, and always makes me hungry! I'm glad you will be able to get the nutrition you need!
I don't have CF, but I can tell you, the G/J tube was one of the best decisions of my life. It makes sense to have access to both. I will say, there are issues for some keeping the Jejunal portion down. I definitely struggled with that. The Kimberly Clark Mickey G/J, which is really popular, was a complete disaster for me, both the dangler and the button versions. I have had great success with Boston Scientific, which actually sutures to your intestines to hold it, but I didn't like that there wasn't a button option. Now I use the AMT g-jet button. I've had it for over a year, and it hasn't flipped into my stomach once!
I can totally relate to feeling like a weirdo on the porch hahaha. When we recently stayed at a hotel I decided to get some air and sit out on our balcony with my feeds and IVs hung up on my pole. Lets just say I hot a whole lot of weird looks 😂. So glad you have some more options to try to get some more of your fuel in💜
I have a GJ. It's literally life saving. I've had a G tube for about a year and a half and they just changed it to a GJ a week and a few days ago. It's great cuz I've thrown up since I've had it and I didn't throw up the feed just the food I had eaten. It's awesome!
MOUTH WATERING!!! Now I need to go to the store and get a pork loin and copy your recipe! That looked amazing Peter and Mary. How does Ollie handle smelling stuff like that and not beg? I'm begging as I sit and watch. LOL :0D
Wow, this is great news. The extra fuel will give your body so much more to work with, and hopefully you will get some of your energy back. I'm excited for you.
I have that cart too, works so well for meds organization. Good luck with your GJ placement :) P.S. Your team sounds really on top of things, communication-wise.
Hey ya Marry, I was just wondering if you can do a video about some of the things that you like to eat when you get low blood sugar? I was just told today that I have it to and was just wondering what you eat/like to when it happens to you? what kind of things do you find most helpful???
Summer King love this question!! I do know she has in a few videos had either little apple sauce cups or those like squeeze pouches of them. she said she uses those for when her blood sugar gets too low n I thought that was a great idea! if I don't eat every 2hrs or so I get hand tremors that get worse n worse the longer I dnt eat it can get very painful! I usually have little gummy snacks my fav are the welches w yogurt but I also like a little cup of sherbet or frozen yogurt bc it's always easy on my stomach. I think it all depends on what u like tho I do like her applesauce idea! hope that helps!
Has Mary ever tried an inversion table? I know how she likes to do hand stands (which is pretty cool btw) just wondering if something like that would help. God bless you both and Oliver.
It's still a surgery as they have to make a stoma (hole), mine is a J and I had it endoscopically under sedation only. I would've preferred to be put out completely. Mary if you want to see placement I can send you a picture of where mine is, it's the same placement as a GJ the way mine was done. I know you've seen my Instagram :)
Hi Peter and Mary this is soooo of topic but I purchased a Standard poodle puppy today I want to feed him only the best what was the name of the treats you said you feed Oliver and what brand food ..... I started watching your vlog because I was watching the one where you were grooming him and from there just got stuck on watching you all and your day to day life with CF and watching God and his many blessings thanks for sharing
Your meal looked Awsome.I am happy that Mary can eat a little better.The picture at the end with the three of you should be a 8x10 for sure.Love watching.Margaret from Florida.😀💝🎋
Laura Cummings your ok! Increasing my feeds anymore would leave me extremely nauseous and unable to eat real food throughout the day. As much as walking is bad for my weight it's great for my lungs so it's a catch 22
Hey! I just had my tube removed because I'm now being fed via a port in my chest going into my heart. If you have ANY questions or want to talk about it, I'm here for ya! I'm a pro ;)
It's warmer in NJ today then it was yesterday 77 degrees. Is this strange weather or what. Hopefully it's not the calm before the storm. Maybe it's a early spring and hopefully no more cold or snow.
also Mary, where did you get your yoga wheel? have you tried a yoga ball? I can't live without my yoga ball!! but I love that you can squat/stand on the wheel, I really want to get one!
It depends on the surgeon, but it is possible to get the g-tube placed with just a local anesthetic. I would really discuss that option thoroughly though! It could be very unpleasant.
Sizzle Sizzle Frey Frey!! Cooking with Peter and Mary!! Love!
Was going to lie down for a nap and got a beep on my phone for a new Frey Life Video...guess nap can wait :)
you can buy zip n steam bags at Walmart and you can steam any vegetables in the microwave. frozen or fresh.
You need to call that vlog "Mary's hardcore stomach piercing"
megangunther86 That is totally how I descibed my J tube to my friends! XD
megangunther86 YES!!
So J tubes can never be changed at home; that's only a thing for the shorter G tubes that terminate in the stomach rather than snaking down into the small intestine. Jejunal tubes-whether they are surgical J tubes, transgastric J tubes, GJ tubes, or NJ tubes-all get changed by a doctor. Depending on the hospital, those changes may be done by an endoscopist under fluoroscopic guidance and endoscope visualization, by an interventional radiologist (again with placement confirmed radiologically), or by a surgeon with placement confirmation performed after the procedure in a separate department of the hospital. The common theme there is that you really can't know a J tube is correctly in place without either an endoscope to see directly or radiologic confirmation (they have a radiopaque strip). In extremely rare cases (and sometimes against doctors' recommendations), patients who have very established surgical J tracts are able to change them out at home, especially if they are using a button or tube with very little "tail" to worry about.
Heather Rottenberg I can change mine at home, but that's because my J tube has no tail. It just goes directly into my small intestine. My doctor uses g-tubes even for his j-tube placements. But yeah, if it has a tail ya need to have a doctor do it. They don't usually need to use anesthesia for tube changes. It's uncomfortable, but not too bad.
megangunther86 yes
My grandson had g-tube a few days after he was born until age 9. It was a life saver.
Love you got o enjoy the outdoors for a while on your porch. Your dinner looked amazing. You and Peter are a great couple.
I just love you guys! I see God working through you and your Vlog. I watch you about everyday and then take a moment to pray for you both. Thank you for sharing with the world.
Hope your GJ placement goes well for you and it turns out to be the best option. I have had my NJ in for awhile now and get my GJ placed March 16th. I can't wait!
thats awesome!! i hope it goes well
+jessie scribbles Thank you! I have had such trouble with my NJ tube. Had to get it replaced 3 different times in the first week so I'm hoping the GJ gives me less problems.
Sara Ringer Good luck! Hope all goes well!!! 💚
I'm so glad you have that GJ option now! I better get started on making you reusable pads to wear around your tubie!! :).
I got so hungry just watching you guys cook.
Love you both! Blessings!
Love Marys sense of humor. I find their cooking recipes relaxation. please post more recipes providing. Mary is up to it. Good luck with feeding. tube.
Awwww. I squealed from cuteness at the end when you were laying on the floor with Ollie-boy!!
You got this girl! I have a J tube and would be happy to answer any questions. Make sure you get some cute tubie pads! They are fun and will keep your tube site more comfortable than gauze does. I got mine from SewKnotLoopy on Etsy.
I meet a C.F. family in the hospital that loves you. My son is on the same floor different sides. They love you so you have more fans than me in good ole TN.. Glad to hear good news about possible tubes..
So glad you are comfortable with this. Hugs and Love, Sweetpea. ❤ ❤❤❤ Prayers that it makes things better for you.
Props to Peter for putting a little more work on himself to make Mary's day a bit brighter!
15:40 Oh, it's so tender! Great job, Frey Frey!
Hey Mary, This is totally off any subject you have talked about but you can have your wedding rings soldered together. I did this. They use a little white gold or gold depending on what your rings are made with between them and they don't move or turn on you. Just a thought.
hey mary and peter (and ollie🐾)! i only subscribed a few weeks ago but your videos have already become the highlight of my day. it's so affirming and comforting to see how much you care for each other and how you take time every day to enjoy things together. thank you for doing what you do!! hoping the tube placement goes super smoothly! also that dinner looks sooo good 😋
I have a g-tube. I had no problems or pain with getting mine. I'm unable to eat by mouth so all of my medications and nutrition go through the tube. Praying that your procedure goes as smoothly as mine.
Hi Mary and Peter! I have follow you for a couple of years now and you you guys are so awesome. I want to tell you ab little bit about me and who I am. I have a terminal disease called SMA type 2 and I have a tracheostomhy and a ventilator helping me to breathe 24/7 and I have a g-tube for my nutrison 12 h a day. I have had g-tube feeding for 3 years now and it´s hard some times but I´m glad that I made that decision to have one. I change mine at home after 8 weeks and it`s very easy. When you have tracheosstmhy you cough a lot and get a lot of moucus in your trhroat and in your lungs so I have a suction machine and a cough assist machine to helping me cleaning mthroat, mouth and lungs and helping me to cough a little bit harder.
I watching your videos every night before I goes to sleep and love your service dog Oliver he´s so cute.
My husband ana I lives in the north of Sweden in a small town called Boden with our dog Billy and my stephson and they are my caregivers too.
Feel free to ask questions about everything you want
My english is not so good in writning but I hoe you understand the mot part of it but if you did´nt pleaase let me know
Great news on the GJ! My son's GJ was life-changing for his health. ❤
Praying for you as your journey continues!
I just found out today that I am a carrier of CF. I am also 18 weeks pregnant so my hubby is getting tested next week. I want to thank you Mary for sharing your story with the world I never knew anything about CF until I found you. That is the only reason I even got tested. Even if my husband test positive for being a carrier I will have more knowledge and confidence to take care of my wonderful little bundle of joy from watching you and Peter! :D
sharolette ogden I was found to be a CF carrier too while pregnant. I'm happy they're testing your husband! My doctor wanted to jump straight to amniocentesis.
I would go with the GJ. but would you get one stoma or get seperate sites. I got a permanite g when you go into sugary bring pillows it helps. but also it may be scary at first but its definitly worth it. it took me a while to recover because i had some comlucations i got it done endoscopicly then had to have a laposcopic surgary. praying for comfort.
My son was in the same situation, re: enlarged spleen and difficulty with a peg placement. Initially he had a peg abs changed it to the pej which he found more tolerable. Praise god since his liver/pancreas transplant, his spleen has shrunk back significantly and now that he doesn't have any pancreatic insufficiency, he have the entire pej removed.
Hey my service dog Valley does the same thing with his head. Mary I'm so glad you're doing well... Your in my prayers!
My daughter has a Micky Button and it has been the best thing she is doing so so much better than she did with out it. You guys are always in my prayers
I love how your zenpep is sat right next to the pepper - zenpep, the OTHER condiment.
Dinner at the Frey Life house looks so good! Mary, I think your body will benefit greatly from the tube. Fuel will help you feel better.
I'm happy you are getting a food tube. My first husband, when he was dying with terminal cancer, had a feeding tube put into his stomach. They put it down his throat into his stomach then made the hole and inflated the balloon. The tube was amazing! He put weight back on and whatever our son and I were eating he could have. We just blended it in the blender with milk or water. I think you will do amazing on the tube! Good luck!
You need to go on etsy and buy lots of g tube pads. You'll need them before your tube is placed. Gauze and tape leads to infection. The pads come in any cute design you want! They let the stoma breathe but catch any leakage if you have any. I have some new ones I can send you. Buy bamboo! Any other material doesn't clean well or last long. Bamboo washes right out and never stains. You'll also want to buy tube wraps for where the extention connects. I can send you those too if you want. It keeps the med port from popping open and leaking everywhere. They are lovely accessories too. Oh, buy some calmoseptine! I can send some of that too, I bought in bulk. It keeps your tube from getting irritated and keeps away granulation tissue. As for sedation, they can just put some benadryl into your IV. It does the trick! My last two surgeries, that's what I used because I have problems with sedation as well. Let's talk!
Have you ever tried rosemary on roasted veggies or potatoes? sooo yummy!!! love your meals!!!
Melissa Martin I was thinking the same thing, that rosemary would be good on those carrots LOL
Yes! Olive oil, kosher salt, pepper and rosemary! I love when they cook! This meal looked so good!!
My favourite is thyme for roasted potatoes :).
Praying that whatever the possibility is, it will give you great success!
I wish you luck on the tube placement! Glad you guys got to enjoy the weather.
Mary, I am so glad you get to have a permanent GJ tube placed! Now your body will get the fuel it needs to help you fight.
Just FYI, you are not supposed to lock the lid on during cooking; only there for transporting.
Oh my gosh, I was dying to see Peter bite into the delicious, glazed pork roast!!! :-)
Mary, have you heard about the new vest? Our sons RT came by yesterday and told us about it. It's called Afflovest. My son has a g-tube and it is wonderful.
I'm so beyond happy for you that you're going to get a permanent feeding tube!! Sounds like God is answering all of our prayers!!
Have a great day, enjoy the sunshine. Love you both.♥♥
So excited for your new tube possibility. I know with the tube you were having a difficult time but you looked like you had so much more energy. Dinner looks yummy!
omg. i think I saw the surprise! super excited
I've had a Gtube since i was a baby and about a year ago i got it taken out because i started gaining enough weight on my own. but the years i had the tube feedings help so much with my weight.
I love how you always interlace your fingers when you high five ❤ it's so cute
Your videos make my day so much better.
I recommend a MIC-key button Mary! my 2 year old has one and it's a life saver with no discomfort! if you can do your port, the button will be a walk in the park. also, ask about getting a fundoplication. not sure on spelling, but it will keep you from throwing up. your always in my prayers! good luck!
Jade just got her g tube and the recovery is easy. Obviously it's different for everyone but it is very mild pain. She was sitting up on her own the same day. :) so excited you're getting something permanent. Can't wait for your nutrition to improve. You'll feel so amazing 💕
Ollie makes the cutest cuddle pillow!
you guys are so strong to be able to go through this.
I love you guys so much and I am realy proud of you
And you're correct, everyone's recovery is different. A lot of people can be in and out of the hospital the same day, or just stay one night. I was there on pain meds for 9 days, stayed in my house for about 2 additional weeks, didn't really get back to myself for about 6 weeks. However, apparently, once they got in there, they realized my stomach is structured weird, and they hit a nerve. Hope for the best, but be prepared for potential issues. They often don't know what they're getting into until they're doing the procedure. I wish you the very best!
Mary and Peter I salute you for all you do for each other and how positive and strong you are as a couple you inspire us all. I didn't think I was even going to graduate due to finally being diagnosed with Behçet's disease (ulceration throughout my body) but I am now studying to be a veterinarian and it is a great deal due to your positivity and sharing your story with us. You guys gave me hope when I thought there was none and my friends and even my own teachers bullied me for not being able to come to school sometimes. It got to the point where one teacher in particular would pretend I was invisible in class and find it funny and consistently tell me that my disease was all in my head despite hospital visits and doctors letters. You helped me laugh and realise I wasn't abnormal 😂 and that I could do more than I thought. Thank you so much Frey life I wish you all the best in your journey
I remember when I had my G TUBE my thoughts and prayers are with you mary god bless
For a second I thought you were on a boat! Then I realized that sound was your vest and that your vest wasn't in fact a life jacket! Also, my cat was legitimately watching this video with me! I've been binge watching all of your guys' videos for about the last 2 weeks since I just found you!
Looks yummy guys, how long did you cook your carrots Mary? I am so happy to see you feeling energetic and hungry Mary! sizzle sizzle Frey Frey! 💕🇨🇦🌞🎀💐
Mary I'm so excited for you to get a g/j-tube. The tube usually goes around your belly button. My residents have tubes and there's all sorts of then.
I had my first tube placed vie an EGD. It was a GJ. It worked pretty well but did displace quite a bit. Hopefully the new tube type works as he says. Good luck! The GJ tube recovery was way easier than the J. :)
I feel that you have gone through enough with the nj tube. I hope the new tube will be more user friendly and far less disruptive in your life. Sending a hug and prayers.
I've had several, and the g/j is the BEST! It's useful for so many reasons! If you feel like you're gonna barf, you can vent it out the G portion too. You can also get an extention where the tube is way long and it doesn't curl back up when vomiting. I have mine and can show you....they let me keep it after removal. Ew. Lol. You are right, you won't have surgery...just a procedure. The tube goes down your nose, btw. I was actually awake during mine. It's all good. Do it! As for where it will be, it will be right below your last rib. Depends on where your stomach lies but yes, right under last rib and directly straight down from your breast.
My 7 year old has a GJ it's been good but the risk of the J coiling back into the stomach but she's too tiny for the anti-coil ones. While some of it sucks the benefits outweigh the risks.
Mary, your outfit is super cute:) Can you and Peter come be my personal chef😂. everything you make looks so good, and always makes me hungry! I'm glad you will be able to get the nutrition you need!
I don't have CF, but I can tell you, the G/J tube was one of the best decisions of my life. It makes sense to have access to both. I will say, there are issues for some keeping the Jejunal portion down. I definitely struggled with that. The Kimberly Clark Mickey G/J, which is really popular, was a complete disaster for me, both the dangler and the button versions. I have had great success with Boston Scientific, which actually sutures to your intestines to hold it, but I didn't like that there wasn't a button option. Now I use the AMT g-jet button. I've had it for over a year, and it hasn't flipped into my stomach once!
I can totally relate to feeling like a weirdo on the porch hahaha. When we recently stayed at a hotel I decided to get some air and sit out on our balcony with my feeds and IVs hung up on my pole. Lets just say I hot a whole lot of weird looks 😂. So glad you have some more options to try to get some more of your fuel in💜
I know exactly what pinterest recipe you used - my husband and I have made it a bunch! We love it!
Hey guys!!! Hope your new state is treating you guys right!! We miss you in MA!
so good to see you each day.
I have a GJ. It's literally life saving. I've had a G tube for about a year and a half and they just changed it to a GJ a week and a few days ago. It's great cuz I've thrown up since I've had it and I didn't throw up the feed just the food I had eaten. It's awesome!
MOUTH WATERING!!! Now I need to go to the store and get a pork loin and copy your recipe! That looked amazing Peter and Mary. How does Ollie handle smelling stuff like that and not beg? I'm begging as I sit and watch. LOL :0D
Peter and Mary I got the same crockpot you got that's funny we must have the same taste in picking out kitchen appliances
Congratulations on the good news regarding the GJ! So happy you don't have to continue going through the NJ process :)
Wow, this is great news. The extra fuel will give your body so much more to work with, and hopefully you will get some of your energy back. I'm excited for you.
Best ending yet!! Super cute!
I have that cart too, works so well for meds organization. Good luck with your GJ placement :) P.S. Your team sounds really on top of things, communication-wise.
I love you guys! Lol.
Peter: it's like getting a piercing.
Mary: ...through your entire abdominal wall!
Hey ya Marry, I was just wondering if you can do a video about some of the things that you like to eat when you get low blood sugar? I was just told today that I have it to and was just wondering what you eat/like to when it happens to you? what kind of things do you find most helpful???
Summer King love this question!!
I do know she has in a few videos had either little apple sauce cups or those like squeeze pouches of them. she said she uses those for when her blood sugar gets too low n I thought that was a great idea!
if I don't eat every 2hrs or so I get hand tremors that get worse n worse the longer I dnt eat it can get very painful! I usually have little gummy snacks my fav are the welches w yogurt but I also like a little cup of sherbet or frozen yogurt bc it's always easy on my stomach. I think it all depends on what u like tho I do like her applesauce idea! hope that helps!
Has Mary ever tried an inversion table? I know how she likes to do hand stands (which is pretty cool btw) just wondering if something like that would help. God bless you both and Oliver.
It's still a surgery as they have to make a stoma (hole), mine is a J and I had it endoscopically under sedation only. I would've preferred to be put out completely. Mary if you want to see placement I can send you a picture of where mine is, it's the same placement as a GJ the way mine was done. I know you've seen my Instagram :)
My family makes that Balsamic Pork as well. It's so good! Also, if you have any leftovers, it is amazing on a pulled pork sandwich!
Hi Peter and Mary this is soooo of topic but I purchased a Standard poodle puppy today I want to feed him only the best what was the name of the treats you said you feed Oliver and what brand food ..... I started watching your vlog because I was watching the one where you were grooming him and from there just got stuck on watching you all and your day to day life with CF and watching God and his many blessings thanks for sharing
Angela Mathis I think they might say in their service dog q and a
Love y'all . Wonder why ad didn't play ? Don't mind at all watching it for y'all .
The weather has been nice . Glad it's made it your way too.
Your meal looked Awsome.I am happy that Mary can eat a little better.The picture at the end with the three of you should be a 8x10 for sure.Love watching.Margaret from Florida.😀💝🎋
You totally got this surgery! Your gonna rock it! This vlog made me so hungry haha. And the ending was adorable!
Laura Cummings yes
Laura Cummings I do. But in also walking 4-5 miles a day so it's a hard balance
Laura Cummings your ok! Increasing my feeds anymore would leave me extremely nauseous and unable to eat real food throughout the day. As much as walking is bad for my weight it's great for my lungs so it's a catch 22
You three are amazing!!!!! I love you guys and I am praying for you!!!!
I'm definitely trying this recipe! Also, I wish you so much luck with this feeding tube. :)
That's a super great shot of the three of you toward the end! :D ^,,^ :D
I'm worried about stuff like ruptures, bleeding, your enlarged spleen, etc.. You guys make cooking look like fun. Love your dinner selection. 💞🙏😘
New song coming? No more tube in my nose!!!
Ur dinner looks awesome. :D Great news on ur feeding tube, Mary! :) Bon appetit!
I always open my slow cooker! I'm gonna try out this recipe soon...sounds good.
....wait...did you say you add cornstarch to the glaze to thicken it?
oooh! I have one of those carts from IKEA- I use it in my kitchen! So cool!
Somehow I read "permanent" as "peppermint" and got really confused! 😂😂😂
I had saved this video in hopes of making the pork you guys made here. Made it today and it is ahhh mazing!!!! Thanks for the recipe!
Hey! I just had my tube removed because I'm now being fed via a port in my chest going into my heart. If you have ANY questions or want to talk about it, I'm here for ya! I'm a pro ;)
I am so excited for you! It will change your life
WHOA. A GJ that doesn't migrate?!? My mind is blown. So glad you guys are getting a plan in place 💕
Love that ending. So cute.
Helloooo!
Happy your new vlog is online:)
Cooking with the Frey Life. The Dale Tribe also did a cooking show in their vlog.
It's warmer in NJ today then it was yesterday 77 degrees. Is this strange weather or what. Hopefully it's not the calm before the storm. Maybe it's a early spring and hopefully no more cold or snow.
also Mary, where did you get your yoga wheel? have you tried a yoga ball? I can't live without my yoga ball!! but I love that you can squat/stand on the wheel, I really want to get one!
Ollie is so adorable
It depends on the surgeon, but it is possible to get the g-tube placed with just a local anesthetic. I would really discuss that option thoroughly though! It could be very unpleasant.