Go on Etsy and look for feeding tube backpacks, some people take regular backpacks and modify them specifically to hold bags of fluids and the pump and they make them super cute! also, "I ain't got no needle in my chest, in my chest" either!!! AND we have the same IV pole!!! I'm going to be decorating mine with washi tape and/or stickers i think cause i have to decorate all of my medical devices apparently lol! And, just so you know, if by any chance the tube DOES get clogged (which is possible since like you said the formula goes low and slow AND the formula has a lot of sugar that makes it easier to gunk up the tube and clog it) If you take a syringe full of Coca Cola and slowly push it, the carbonation and the acidity of it will break down the clog so you hopefully dont have to get it replaced. Also, I HIGHLY suggest joining a Tubie (someone with a feeding tube) support group, youll learn so many tips and tricks on how to make your life a bit easier and its a great place to go when you have questions. plus its always nice to feel like a part of a community who totally understands what you're going through, as I know you already know
aw thank you!!!! You end up learning a LOT really fast when you have a chronic illness and i have around 15-20 diagnosis currently and still have symptoms that aren't diagnosed lol
It's crazy that someone out there uses the same tricks as I do. The Coca-Cola... the special bagpacks... the pole beside my bed right now decorated with washi tape from head to toe :D Thats amazing, keep on fighting. Best regards from Germany!
EXACTLY!!!!! I am obsessed with finding new spoonie youtubers to watch since thats pretty much all I can do all day is watch youtube and network with spoonies on social media (I'm SpoonieSwift91)
Oh my goodness! I just came from the 'Meet my Boyfriend' video to this, The Frey Life and the Mandeville Sisters are my favourite youtubers. I am so glad that the Mandev sisters are part of the Frey Life too! And Amelie, I agree!
As a NICU RN, I love your outlook and ability to find even the tiniest tidbit of good in any situation. You and Peter both have an intelligent grasp of your disease process and you keep it all, even the bad days, in perspective. You couldn't get a more wonderful and knowledgeable advocate and support than Peter. Of course, there's precious Ollie who gives more than you'll ever know. You all have my utmost respect for keeping daily life as "normal" as it can be despite the constant CF treatments intrusions . Thank you for allowing me to follow along on your journey with you from here in Ontario. Hoping you can tolerate the NJ feeds.
Karen Jones My daughter was in the NICU last May, and I just have to say, NICU nurses are AWESOME! Thank you for all you do for your little patients, and their parents too
Rebecca Moon Thank you so much for those very kind words, Rebecca! We NICU nurses absolutely love our jobs and it's so gratifying to hear sentiments like yours! One of my own grandsons had a bowel malformation and was admitted to my own NICU, and when he got sicker and needed more intervention, he had to be transported out to a different centre for surgery. He's a happy and healthy 2-year old now, but I've been able to experience the NICU from the perspectives of both the caregiver and the grandmother. Thanks again! Hope your daughter is doing well!
So I work at American eagle(a clothing store) and a lady came in looking for a purple shirt because her daughter has cf and She said today was awareness day so I asked her if she watched your vlogs and she said she does! What a small world! Love you guys and praying for you. ❤
Mary, your smile is precious just as you, Peter and Ollie are to all of us. I love it when you sing 'we're goin home.' It's so wonderful to see you home. God Bless ❤🙏
Mary, what a brave woman you are! And I'm so glad you & Peter have each other & Oliver. Peter, what a wonderful husband you are! And Oliver, you're a great helper & quite the handsome dog! You both are such an inspiration. Many many blessings!
Mary I am so glad that you are home. Now Peter and Mary get some good rest. It is so inspiring how Peter takes such good care of you. Hugs to both of you.
Yay, you're singing again!!! I meant to tell you guys that I LOVE the new intro - it really captures how much your vlogging has grown and how inspirational and hopeful you are. Thanks for sharing the rough times and the good times. I've learned so much about CF and about staying positive. You all inspire me, as do your other subscribers. Keeping you all in my thoughts and prayers all the time.
Mary, you and Peter are truly an inspiration on so many levels. I have a close friend with C.F. and I have seen first hand the effects it has on a person's body but to go through every thing else on top of that and to stay so hopeful and happy is just a blessing. I will keep you both and Ollie in my thoughts and prayers at all times
YAY!!! Hey Mary, so glad you are home!!! Glad you felt so awesome yesterday...I know those are rare days for you lately. Peter, you are an amazing young man...Mary couldn't have found a better soulmate...You both are so lucky to have one another. Love you both!!!
So good to see you home Mary (and Peter and Bonesy)! The worst part is behind you. Getting used to a feeding tube is hard. I have a g-tube and at the beginning It was really difficult, but now a year later, its the best thing I ever did 💜
Wow look at the difference of 5 years!! Praise God! 🙌🙌 Idk y this video popped up in my suggested but I'm glad it did bc it reminded me of the miracles God can do! My health n my husband's has declined so much for so long n it can be disheartening n overwhelming at times. But I've watched your videos for many years now n I still find strength in all your sayings like "don't forget to laugh everyday" n esp "do what you think you can't do". Your joy n faith in God is infectious! Thank you Mary and Peter for sharing your world with us and inspiring n encouraging us all! 💜 🌸 May God bring you n your family good health n many blessings this new year! God bless!! 🙏
I used to have an Etsy shop making feeding tube bags. I started making them for myself when I couldn't fine one that had all the elements that I wanted. I stopped making them after I found a !!!!!!! VERY HELPFUL TIP!!!!! If you go to the sporting goods section of target or Walmart or to the sporting goods store and get one of the backpacks designed to carry water in a bladder with a hose going through some strapping to keep everything in place as well as pockets and great storage capabilities. I just take out the water bladder and hose. I hang the FT bag from the Velcro loop that held the water bag (I also use a small binder clip to make sure the Velcro doesn't come undone from the weight of the bag. Then I snake the tubing through the straps, under my shirt (if you want to do it that way) and connected it to my tube. I also found it helpful to put a para-cord bracelet or something around the bottom of the strap and tubing so it does not flap everywhere and get caught on door knobs and the like. I can show you a picture if you can't picture what i'm referring to. Also, something I found VERY VERY helpful with the pain was viscous lidocaine. It is a prescription and it is a little gross to use but once you realize what a relief it is you won't care how weird it feels in your mouth before you swallow. I finally got smart though and took a very small syringe (no needle) filled with the solution and directed it back towards the problem are so that my whole mouth wasn't numb. I hope you find any of this helpful. I have had multiple kinds of feeding tubes over the last few years and I have learned a lot of helpful tricks so don't hesitate to ask if you need some help. Oh and BTW, the pain does get better.Hang in there!!!!!
So wonderful to see you all perky and feeling better!! The pain has eased off.... so far so good with the new "fuel".... you are gaining.... you're energetic.... no needle in your armpit....and now you're home with beautiful anniversary photos, a beautiful pillow cover, and a neat mug that shows Ollie when hot!!!! How exciting!! It broke my heart to see you go through that rough time!! Thank the Lord, that is over and things are looking up!
Watching you set up your feed brings back a flood of memories for me. Our son has Cerebral palsy and had a g-button feeding tube as a baby. We used the same exact pump system to give him pumped breast milk. It will soon become second nature and you'll practically be able to do it with your eyes closed. ☺ so glad to see you at home, with your energy up!
Thank you! Your smile and positivity are just what I need right now! Having a pretty bad Crohn's flare and just found out I have CHF, but you help remind me to just take a step back be thankful for what is going good and what I do have. And I can only do what I can do! Life can be challenging but it is still what I me of it! Love watching you guys and the love you share! So excited for you both that you are home!
I follow about 10 vlogs that I watch every evening and everytime I watch yours which is one of my favorites I find myself getting sleepy not because its boring but because you both have such soothing voices!! So happy Mary is home and feeling a bit better.
We all are so happy to see you guys home. I am sure you guys are very excited to be home, in your own bed, and back into the "Frey Life Routine" at home. I am continuing to pray for you guys. I'm also another person that loves to decorate/bedazzle a lot of medical stuff and non-medical things as well. We have to add some cheer to our lives that can be challenged by health problems, treatments, etc. Hope you guys can have a restful weekend at home. Take care and look forward to seeing you guys tomorrow!
just started watching you and you make me feel as if I should be positive towards my treatment and be positive towards my disease and not be so negative thank you Mary ❤
I am so happy your all home! Mary you truly inspire me with the positivity you have about everything. home is where the heart is and your home. much love to you all.
It is so good to see you at home! YAY! I am hoping your throat will heal better now that you are at home and it is awesome to hear you are gaining weight Mary. Keep up the great work you are doing girl!
Here is a tip from one Tubie to another spilling is inevitable, It will happen eventually. I still spill and mess up and I have been doing tube feedings for 26 years (my whole life) I have even once turned on my food without connecting it to my g-tube. I have gone to pour and managed to get it everywhere, I have had bags have wholes in them thanks to my cats, and I have had my bag disconnect from my extension tube before also. So it's going to happen no matter how hard you try, that is why I always pour my formula/fuel over a sink just in case. Good luck Mary
Mary we use the same pumps at work and it really does prime faster if you use the prime buttom on the pump. Heads up the tube can come undone. Look at the end of the tube where the tube meets the cone,it unscrews. Seems like plugging and unplugging the tube makes it come unscrewed.
Keep going Mary , I'm rooting for you and i will keep praying for you dear.May God good keeps you company in tough time.Thanks for showing us life on another angle , tough but still enjoyable.May your family be blessed.
Mary you are a superstar! I couldn't imagine all the pain you go through everyday. God bless you and Peter and may God guide you through this bad time.
I'm glad you addressed the J tube thing. I honestly should have thought about all that with the recovery time. So glad you had energy yesterday my dears.
I'm so glad you're home 🏡🤗 Mary you're looking really beautiful ( like always) I can see it in your skin color, looks like you've got a beautiful glow, I'm sure your feedings are giving you the much needed fuel. Keep up the good work, my prayers and thoughts are with the 3 of you. Love and hugs to the 3 of you, see you tomorrow!
Thanx for explaining why Mary can not have a PEG-tube in her stomache. I am happy to see both of you at home again! Jihooo!!!! Mary i am so proud of you fighting hard all the time but you are always smiling! Peter, you do a fantastic work suporting your beautiful wife. I have never seen so strong love as i see between you two. Lots of hugs from Gotland Sweden here!
Love seeing you with so much energy Mary! The ain't got no needle in my chest chant makes me laugh I love it! Good way to celebrate these things with chants. 😊 Always praying for you guys.
Such a beautiful young lady !! Inside & Out!! I'm so happy to see you looking better. I think that "Hi-test" fuel is starting to work. Maybe now your body will have the energy needed to help fight the infection and keep you as well as possible. You are so very blessed to have a loving hubby as Peter and of course, Ollie. "See Ya Tomorrow!"
My daughter, who has a g and a separate J-tube, loves watching your videos. She uses a water pack backpack that joggers use. We got her backpack at Target. It works really well because it has a place to hang the feeding bag and a hole in the backpack to put a tube through. It was cheaper than the ones on Etsy and it lasts a lot longer than the one her medical supply company sent. You are in our prayers.
I've been catching up on videos (was on vacation) and it was so nice to see you have some energy today, Mary! I've read some of the newer video titles so I know there's some bumps in the road ahead but I hope you're able to keep feeling more energetic than you have been these last few months :)
Hey hunny, it will make it dramatically easier and more comfortable if you tape the tube behind your ear/down your neck as well as to your cheek!! Here's the comment I left this morning, on Yesterday's vlog explaining more lol. I just copied it rather than re-typing! "Mary, it helps *drastically* to hold the tube more securely in place if you secure it behind your ear as well as to your cheek. Thread it over your ear, like you already do, and get *all* of your little hairs off of your neck and from behind your ear, then secure it down the back of your neck vertically. As close to the back of your ear as possible, it's more like the side of your neck than the back of it really lol. Then just throw it back over your shoulder, to the front! 😝 I unfortunately have a lot of experience with 2 of my babies with gtubes, as well as jtubes, and that's what we did, it *really* helps. Especially when you're moving around alot.... can't really make a baby not explore these new accessories they were so blessed with 😄 lol!! I thought of this when you were going to exercise, hope it helps! *I'M SO SO SOO HAPPY TO SEE YOU EATING AND LOOKING SOO MUCH BETTER* 😘😘 *XOXOX* Tuesday's vlog was so scary 😢 I just wanted to give you the biggest ((HUGS))!! It hurt to see you crying and in so much pain! But you are such an amazingly strong person (you all are) and I love you for that 💝🎉 Peter and Ollie, keep doing what you do, you're both such amazing companions🙌! 😋🐩 haha this is the only doggy emoji I have and while it is pink, it still happens to be an adorable poodle baby like Ollie boy 😄😄. I hope you guys all have an awesome day!! I rescheduled my 2 appointments I had today as soon as my drs office's opened this morning because I have over exerted myself and just need some serious *rest*! After having this "long-term chronic bronchitis" for over a month, on top of my daily health problems, plus getting used to a few new meds and side effects, JUST FOR TODAY, my flying will consist of laying on my couch, watching Netflix and catching up on some much needed SLEEP *LOL*!! SORRY THIS IS SO LONG LOL, I WAS NOT PLANNING ON SAYING THIS MUCH 😊 BUT IF YOU MADE IT THIS FAR, THANKS FOR READING AND I HOPE YOU HAVE AN AWESOME DAY AS WELL LOL! 💙💙" Okay that was it, lol, now I want to say *YAAAAAY!! I'M SO HAPPY YOU'RE HOME* 😆 I know it's hard but force yourself to rest, even if you feel like a jumping bean lol! I posted this there and here because I really think it could benefit you. Idk why your nurses didn't tell you to try this, especially with it being a PEDs hospital.. WEIRD! But, I hope it helps! Can't wait to see how you are tomorrow! I just woke up from an amazing nap, and am now moving to my couch to continue my day of rest lol. Bye loves 😘
SO glad I found you guys. My son has a g-tube and did a month of ng beforehand. So I completely understand. My son is non-verbal so it's fun to hear you tell how you're feeling with your feeds. Your vlogs have been fascinating to me to watch! May prayers for you. -Jessica
Waahhoo you are home, so happy for you and you can tell that something is helping because your eye's are even brighter and the energy was so good to see.....
when you use the infinity pump don't pull on the cartridge lines, it could make them leak. Hold the plastic when you pull the cartridge. Just a helpful tip. I am a home health nurse and my client uses the infinity pump and I learned the hard way. You both are an inspiration!! Keep fighting and God bless!
Mary, even through all of this, you seem just "better" than I feel like you've seemed in quite a few weeks/months. Maybe it's just what the video is capturing vs. what's not filmed (I mean, I hate it when people are like "you're doing great!" and I feel awful). But from an objective point of view, you seem much better. Truly praying that this tube gives your body that boost it needs to get stable and back on track to fighting and laughing and living.
Yay your home.I really pray this tube continues to serve you well.I can see you all are happy to be home.Ollie is he is sleeping already.God bless you all.Margaret from Florida.💝😀
Makes sense thanks for clearing that up. Everyone that flows you loves you and only want you to be happy , seeing you so sad and in pain freaked us out. Of course we understand not every day is wonderful but we love you and the world wants to give you a great big hug love you Mary Peter and olli xoxox
I know this is way in the future (JPEG) but you might consider regional anesthesia rather than sedation for placement. A spinal or epidural (like what is used for C-Section) might be a safer option for you. (Although I hope you are able to get more stable and not need one at all :)
Thank you for addressing the question about the J tube- I was kind of thinking you wouldn't do it since you were hoping that the extra feedings wouldn't be necessary for the long term. You're so strong Mary! Keep it up!
I think with all the lack of nutrition that Mary has been dealing with major malnourishment and when there is a person is malnourished they have major problems. Mary, I'm so happy you're feeling better! And I'm happy that you're fuel is absorbing well too to give you the nutrients you need to help you gain weight and give you what you need to get back on track.
Peter and Mary, I'm so glad that you guys are staying positive and trucking along!! That's so amazing.I HAVE A SUGGESTION :D Could you put "Don't forget to laugh every day" back in the intro? I forget and it's so lovely to have a reminder, especially from you guys. Much love. xoxoxoxo
Hello Mary and Peter! My name is Stephanie and I just wanted to give you guys a quick hello. I just recently found your vlog and have been following your journey for about a month now and I already love it! Your positivity and fun life style is inspiring and motivating. I live with a stomach disorder called gastroparesis, so I resonate with some of the troubles of living with a chronic illness. Your videos help bring some sunshine to my days and remind me to fly when I can't walk on the tougher days! :) Thank you so much for sharing your story, love, and life with us! I know if you can face your illness I can face mine. P.S. My anniversary with my bf is also on Jan 8th, how cool is that
I highly recommend using warm (not hot!) water when you flush your tube. For me warm water has been more successful at preventing my tube from getting clogged. Also if you look online there are backpacks made specifically for Infinity pumps and it makes it easier to access the pump if it starts to beep. Good luck adjusting to your new tube and I really hope you don't need it long term! If your throat is sore I recommend the Cepacol cough drops that have benzocaine because they help numb the throat a bit. It doesn't completely eliminate the pain but it has provided me with some releif. Also when you're priming the tube if you put a clothes pin where you'd normally hold with your finger it allows you to do other things while you wait for it to prime. Just make sure to put the end into an old fuel bottle or put it into the pump bag so it doesn't leak on the floor if you forget about it for a minute. Sorry for the lengthy comment but my heart goes out to you and I'd like to share any knowledge I've gained from experience that I can. You are all in my thoughts and prayers! Sending lots of love to you!❤
Go on Etsy and look for feeding tube backpacks, some people take regular backpacks and modify them specifically to hold bags of fluids and the pump and they make them super cute! also, "I ain't got no needle in my chest, in my chest" either!!! AND we have the same IV pole!!! I'm going to be decorating mine with washi tape and/or stickers i think cause i have to decorate all of my medical devices apparently lol!
And, just so you know, if by any chance the tube DOES get clogged (which is possible since like you said the formula goes low and slow AND the formula has a lot of sugar that makes it easier to gunk up the tube and clog it) If you take a syringe full of Coca Cola and slowly push it, the carbonation and the acidity of it will break down the clog so you hopefully dont have to get it replaced. Also, I HIGHLY suggest joining a Tubie (someone with a feeding tube) support group, youll learn so many tips and tricks on how to make your life a bit easier and its a great place to go when you have questions. plus its always nice to feel like a part of a community who totally understands what you're going through, as I know you already know
Mandie Zangora thats the best advice. you go girl
aw thank you!!!! You end up learning a LOT really fast when you have a chronic illness and i have around 15-20 diagnosis currently and still have symptoms that aren't diagnosed lol
It's crazy that someone out there uses the same tricks as I do. The Coca-Cola... the special bagpacks... the pole beside my bed right now decorated with washi tape from head to toe :D Thats amazing, keep on fighting. Best regards from Germany!
The Coca Cola trick is brilliant! I hope she sees what you wrote!
Our medical supply company gave us a backpack for the pump. It's just black it's not cute but yeah.
Your positivity and happiness is always so inspiring
Mandeville Sisters Oh hey its the Madev sisters! I love that you guys are part of the FreyLife family! You two are some of my favorite UA-camrs. 💜
I love seeing 2 other people whos videos I watch commenting on here, Its awesome that youtubers are so supportive of each other!!!
Mandie Zangora I love it bc I can find other great UA-camrs n fellow spoonies to watch! just subscribed to your channels! ❤❤
EXACTLY!!!!!
I am obsessed with finding new spoonie youtubers to watch since thats pretty much all I can do all day is watch youtube and network with spoonies on social media (I'm SpoonieSwift91)
Oh my goodness! I just came from the 'Meet my Boyfriend' video to this, The Frey Life and the Mandeville Sisters are my favourite youtubers. I am so glad that the Mandev sisters are part of the Frey Life too! And Amelie, I agree!
My partner has ms and is sick in hospital. We are discussing tube feeding-Mary your positivity is really helpful xx
As a NICU RN, I love your outlook and ability to find even the tiniest tidbit of good in any situation. You and Peter both have an intelligent grasp of your disease process and you keep it all, even the bad days, in perspective. You couldn't get a more wonderful and knowledgeable advocate and support than Peter. Of course, there's precious Ollie who gives more than you'll ever know. You all have my utmost respect for keeping daily life as "normal" as it can be despite the constant CF treatments intrusions . Thank you for allowing me to follow along on your journey with you from here in Ontario. Hoping you can tolerate the NJ feeds.
Karen Jones My daughter was in the NICU last May, and I just have to say, NICU nurses are AWESOME! Thank you for all you do for your little patients, and their parents too
Rebecca Moon Thank you so much for those very kind words, Rebecca! We NICU nurses absolutely love our jobs and it's so gratifying to hear sentiments like yours! One of my own grandsons had a bowel malformation and was admitted to my own NICU, and when he got sicker and needed more intervention, he had to be transported out to a different centre for surgery. He's a happy and healthy 2-year old now, but I've been able to experience the NICU from the perspectives of both the caregiver and the grandmother. Thanks again! Hope your daughter is doing well!
So I work at American eagle(a clothing store) and a lady came in looking for a purple shirt because her daughter has cf and She said today was awareness day so I asked her if she watched your vlogs and she said she does! What a small world! Love you guys and praying for you. ❤
Thank you Peter for taking such good care of Mary! You both are such an inspiration to so many!
Mary, your smile is precious just as you, Peter and Ollie are to all of us. I love it when you sing 'we're goin home.' It's so wonderful to see you home. God Bless ❤🙏
So glad your home and the pain is tolerable. Rest well everyone
Mary, what a brave woman you are! And I'm so glad you & Peter have each other & Oliver. Peter, what a wonderful husband you are! And Oliver, you're a great helper & quite the handsome dog! You both are such an inspiration. Many many blessings!
Mary I am so glad that you are home. Now Peter and Mary get some good rest. It is so inspiring how Peter takes such good care of you. Hugs to both of you.
YAY! home after hospital is always the BEST! once after my heart op my family pained a 'welcome home' banner and hung it up, it was lovely xx
Yay, you're singing again!!! I meant to tell you guys that I LOVE the new intro - it really captures how much your vlogging has grown and how inspirational and hopeful you are. Thanks for sharing the rough times and the good times. I've learned so much about CF and about staying positive. You all inspire me, as do your other subscribers. Keeping you all in my thoughts and prayers all the time.
Literally cheered when you said you put on weight! That's so awesome.
It's so good to see Mary a bit more back to herself! You look so full of life and joy and it's a wonderful sight
Mary, you and Peter are truly an inspiration on so many levels. I have a close friend with C.F. and I have seen first hand the effects it has on a person's body but to go through every thing else on top of that and to stay so hopeful and happy is just a blessing. I will keep you both and Ollie in my thoughts and prayers at all times
YAY!!! Hey Mary, so glad you are home!!! Glad you felt so awesome yesterday...I know those are rare days for you lately.
Peter, you are an amazing young man...Mary couldn't have found a better soulmate...You both are so lucky to have one another. Love you both!!!
So good to see you home Mary (and Peter and Bonesy)! The worst part is behind you. Getting used to a feeding tube is hard. I have a g-tube and at the beginning It was really difficult, but now a year later, its the best thing I ever did 💜
I am so glad you're all at home together and feeling great!
Wow look at the difference of 5 years!! Praise God! 🙌🙌
Idk y this video popped up in my suggested but I'm glad it did bc it reminded me of the miracles God can do! My health n my husband's has declined so much for so long n it can be disheartening n overwhelming at times.
But I've watched your videos for many years now n I still find strength in all your sayings like "don't forget to laugh everyday" n esp "do what you think you can't do". Your joy n faith in God is infectious!
Thank you Mary and Peter for sharing your world with us and inspiring n encouraging us all! 💜 🌸
May God bring you n your family good health n many blessings this new year!
God bless!! 🙏
Happy to see you got to go home. Both of you rest and take it easy. This is where pets need to learn to do the dishes and laundry.
I used to have an Etsy shop making feeding tube bags. I started making them for myself when I couldn't fine one that had all the elements that I wanted. I stopped making them after I found a !!!!!!! VERY HELPFUL TIP!!!!! If you go to the sporting goods section of target or Walmart or to the sporting goods store and get one of the backpacks designed to carry water in a bladder with a hose going through some strapping to keep everything in place as well as pockets and great storage capabilities. I just take out the water bladder and hose. I hang the FT bag from the Velcro loop that held the water bag (I also use a small binder clip to make sure the Velcro doesn't come undone from the weight of the bag. Then I snake the tubing through the straps, under my shirt (if you want to do it that way) and connected it to my tube. I also found it helpful to put a para-cord bracelet or something around the bottom of the strap and tubing so it does not flap everywhere and get caught on door knobs and the like. I can show you a picture if you can't picture what i'm referring to. Also, something I found VERY VERY helpful with the pain was viscous lidocaine. It is a prescription and it is a little gross to use but once you realize what a relief it is you won't care how weird it feels in your mouth before you swallow. I finally got smart though and took a very small syringe (no needle) filled with the solution and directed it back towards the problem are so that my whole mouth wasn't numb. I hope you find any of this helpful. I have had multiple kinds of feeding tubes over the last few years and I have learned a lot of helpful tricks so don't hesitate to ask if you need some help. Oh and BTW, the pain does get better.Hang in there!!!!!
What a Saint of a Husband she has. And she’s coming along hopefully Awsome herself!
Praise the Lord, you're home!! Such a blessing. I look forward to your daily videos, such a blessing to me.
So wonderful to see you all perky and feeling better!! The pain has eased off.... so far so good with the new "fuel".... you are gaining.... you're energetic.... no needle in your armpit....and now you're home with beautiful anniversary photos, a beautiful pillow cover, and a neat mug that shows Ollie when hot!!!! How exciting!! It broke my heart to see you go through that rough time!! Thank the Lord, that is over and things are looking up!
Seems to me people would buy an Ollie Mug!
Watching you set up your feed brings back a flood of memories for me. Our son has Cerebral palsy and had a g-button feeding tube as a baby. We used the same exact pump system to give him pumped breast milk. It will soon become second nature and you'll practically be able to do it with your eyes closed. ☺ so glad to see you at home, with your energy up!
Thank you! Your smile and positivity are just what I need right now! Having a pretty bad Crohn's flare and just found out I have CHF, but you help remind me to just take a step back be thankful for what is going good and what I do have. And I can only do what I can do! Life can be challenging but it is still what I me of it! Love watching you guys and the love you share! So excited for you both that you are home!
I enjoyed the Frey Life musical! 😍
The Frye musical is absolutely delightful!
I follow about 10 vlogs that I watch every evening and everytime I watch yours which is one of my favorites I find myself getting sleepy not because its boring but because you both have such soothing voices!! So happy Mary is home and feeling a bit better.
Glad to see Mary so energetic and happy!
We all are so happy to see you guys home. I am sure you guys are very excited to be home, in your own bed, and back into the "Frey Life Routine" at home. I am continuing to pray for you guys. I'm also another person that loves to decorate/bedazzle a lot of medical stuff and non-medical things as well. We have to add some cheer to our lives that can be challenged by health problems, treatments, etc. Hope you guys can have a restful weekend at home. Take care and look forward to seeing you guys tomorrow!
So glad you were feeling well enough to go home! Lots of love!💕
I'm so invested in your journey Mary I woke up this morning and thought I wonder how Mary is feeling .. I hope better ... people care
It's a relief to see you smiling like that Mary :)
I hope that your throat will get better soon :)
Sending prayers!
Anna
just started watching you and you make me feel as if I should be positive towards my treatment and be positive towards my disease and not be so negative
thank you Mary ❤
I am so happy your all home! Mary you truly inspire me with the positivity you have about everything. home is where the heart is and your home. much love to you all.
So glad to see you home! Take care and get some rest!
I am so glad Mary is going home! I was worried the other day when she was in a lot of pain. Hope that continues to heal!
It is so good to see you at home! YAY! I am hoping your throat will heal better now that you are at home and it is awesome to hear you are gaining weight Mary. Keep up the great work you are doing girl!
Here is a tip from one Tubie to another spilling is inevitable, It will happen eventually. I still spill and mess up and I have been doing tube feedings for 26 years (my whole life) I have even once turned on my food without connecting it to my g-tube. I have gone to pour and managed to get it everywhere, I have had bags have wholes in them thanks to my cats, and I have had my bag disconnect from my extension tube before also. So it's going to happen no matter how hard you try, that is why I always pour my formula/fuel over a sink just in case. Good luck Mary
Much love to all three of you! Glad to see you're home now :)
So happy to see you home! Hope things continue to go well.
HAPPY DAY!!!!! Love you kids from afar and asking God to continue to help your recovery
I am so happy that you got to go home! Keep moving forward 🤗
You look so much better and stronger. It's a combination of tube fuel and all the prayers and love coming to you.
Congratulations Mary On Starting To Feel Better 💜💖💜💖
Mary we use the same pumps at work and it really does prime faster if you use the prime buttom on the pump. Heads up the tube can come undone. Look at the end of the tube where the tube meets the cone,it unscrews. Seems like plugging and unplugging the tube makes it come unscrewed.
I think you have been looking terrific! So much more energy. Maybe a crafting day in order is needed!
Keep going Mary , I'm rooting for you and i will keep praying for you dear.May God good keeps you company in tough time.Thanks for showing us life on another angle , tough but still enjoyable.May your family be blessed.
So happy to see that you got to go home.
You guys are so amazing! I can tell you have a faith and a love for the Lord. I'm praying for you.😊😊😊😊
Mary you are a superstar! I couldn't imagine all the pain you go through everyday. God bless you and Peter and may God guide you through this bad time.
I'm glad you addressed the J tube thing. I honestly should have thought about all that with the recovery time. So glad you had energy yesterday my dears.
So glad you are home! You still have our prayers! Keep up the excellent work.
So glad to see that you're feeling better! Hopefully it continues for days to come. Love seeing all the positivity and good energy from you guys 💜
I'm so glad you're home 🏡🤗 Mary you're looking really beautiful ( like always) I can see it in your skin color, looks like you've got a beautiful glow, I'm sure your feedings are giving you the much needed fuel. Keep up the good work, my prayers and thoughts are with the 3 of you. Love and hugs to the 3 of you, see you tomorrow!
Glad you're feeling a little better Mary. I hope tomorrow is even better.
Thanx for explaining why Mary can not have a PEG-tube in her stomache. I am happy to see both of you at home again! Jihooo!!!! Mary i am so proud of you fighting hard all the time but you are always smiling! Peter, you do a fantastic work suporting your beautiful wife. I have never seen so strong love as i see between you two. Lots of hugs from Gotland Sweden here!
Mary I'm so happy to see you home and see your smiling face!!
Keep on trucking you can do anything!!
So lovely to see you, dear beautiful people. God bless, bless, BLESS you!!
Love seeing you with so much energy Mary! The ain't got no needle in my chest chant makes me laugh I love it! Good way to celebrate these things with chants. 😊 Always praying for you guys.
I'm so happy for you both."Their's no place like home"
YAY!! So happy you get to finally be home. I hope everything with the feeding continues to work out in your favor. Stay laughing 💞
Such a beautiful young lady !! Inside & Out!! I'm so happy to see you looking better. I think that "Hi-test" fuel is starting to work. Maybe now your body will have the energy needed to help fight the infection and keep you as well as possible. You are so very blessed to have a loving hubby as Peter and of course, Ollie. "See Ya Tomorrow!"
Praise the Lord that Mary was able to go home!! May the progress continue.
Love you guys
you are such a strong woman. I am so happy for you that you have such a supportive husband. Hugs
So happy that your home Mary, and feeling better. 🦋
My daughter, who has a g and a separate J-tube, loves watching your videos. She uses a water pack backpack that joggers use. We got her backpack at Target. It works really well because it has a place to hang the feeding bag and a hole in the backpack to put a tube through. It was cheaper than the ones on Etsy and it lasts a lot longer than the one her medical supply company sent. You are in our prayers.
So happy y'all are home and you had a good day with some energy!!
I've been catching up on videos (was on vacation) and it was so nice to see you have some energy today, Mary! I've read some of the newer video titles so I know there's some bumps in the road ahead but I hope you're able to keep feeling more energetic than you have been these last few months :)
Feeding tube backpacks are fantastic! I know a lady who converts standard backpacks to hold pumps. If you need it, decorate it!
Your courage and strength amazes me. Mary you are so strong. You and your family are in my prayers!💕💕
Glad you got to go home Mary and Peter! Love you guys so much. It's good to see your new video come up everyday.
So happy your home! You are both beautiful and inspiring people. Thanks for sharing your journey with us!
Hey hunny, it will make it dramatically easier and more comfortable if you tape the tube behind your ear/down your neck as well as to your cheek!! Here's the comment I left this morning, on Yesterday's vlog explaining more lol. I just copied it rather than re-typing!
"Mary, it helps *drastically* to hold the tube more securely in place if you secure it behind your ear as well as to your cheek. Thread it over your ear, like you already do, and get *all* of your little hairs off of your neck and from behind your ear, then secure it down the back of your neck vertically. As close to the back of your ear as possible, it's more like the side of your neck than the back of it really lol. Then just throw it back over your shoulder, to the front! 😝
I unfortunately have a lot of experience with 2 of my babies with gtubes, as well as jtubes, and that's what we did, it *really* helps. Especially when you're moving around alot.... can't really make a baby not explore these new accessories they were so blessed with 😄 lol!! I thought of this when you were going to exercise, hope it helps!
*I'M SO SO SOO HAPPY TO SEE YOU EATING AND LOOKING SOO MUCH BETTER* 😘😘 *XOXOX* Tuesday's vlog was so scary 😢 I just wanted to give you the biggest ((HUGS))!! It hurt to see you crying and in so much pain! But you are such an amazingly strong person (you all are) and I love you for that 💝🎉 Peter and Ollie, keep doing what you do, you're both such amazing companions🙌! 😋🐩 haha this is the only doggy emoji I have and while it is pink, it still happens to be an adorable poodle baby like Ollie boy 😄😄. I hope you guys all have an awesome day!!
I rescheduled my 2 appointments I had today as soon as my drs office's opened this morning because I have over exerted myself and just need some serious *rest*! After having this "long-term chronic bronchitis" for over a month, on top of my daily health problems, plus getting used to a few new meds and side effects, JUST FOR TODAY, my flying will consist of laying on my couch, watching Netflix and catching up on some much needed SLEEP *LOL*!!
SORRY THIS IS SO LONG LOL, I WAS NOT PLANNING ON SAYING THIS MUCH 😊 BUT IF YOU MADE IT THIS FAR, THANKS FOR READING AND I HOPE YOU HAVE AN AWESOME DAY AS WELL LOL! 💙💙"
Okay that was it, lol, now I want to say *YAAAAAY!! I'M SO HAPPY YOU'RE HOME* 😆 I know it's hard but force yourself to rest, even if you feel like a jumping bean lol!
I posted this there and here because I really think it could benefit you. Idk why your nurses didn't tell you to try this, especially with it being a PEDs hospital.. WEIRD! But, I hope it helps! Can't wait to see how you are tomorrow! I just woke up from an amazing nap, and am now moving to my couch to continue my day of rest lol. Bye loves 😘
SO glad I found you guys. My son has a g-tube and did a month of ng beforehand. So I completely understand. My son is non-verbal so it's fun to hear you tell how you're feeling with your feeds. Your vlogs have been fascinating to me to watch! May prayers for you.
-Jessica
Newland Chronicles I just love this comment. I have a g-tube as well if you ever need to ask someone what he may be feeling. 💜
I'm over he moon to see you all at home!! Onwards and upwards from here, my darling friends! xxxxxxxxx
Waahhoo you are home, so happy for you and you can tell that something is helping because your eye's are even brighter and the energy was so good to see.....
when you use the infinity pump don't pull on the cartridge lines, it could make them leak. Hold the plastic when you pull the cartridge. Just a helpful tip. I am a home health nurse and my client uses the infinity pump and I learned the hard way. You both are an inspiration!! Keep fighting and God bless!
Mary, even through all of this, you seem just "better" than I feel like you've seemed in quite a few weeks/months. Maybe it's just what the video is capturing vs. what's not filmed (I mean, I hate it when people are like "you're doing great!" and I feel awful). But from an objective point of view, you seem much better. Truly praying that this tube gives your body that boost it needs to get stable and back on track to fighting and laughing and living.
Good news Mary and Peter. God continue to bless you
Yay your home.I really pray this tube continues to serve you well.I can see you all are happy to be home.Ollie is he is sleeping already.God bless you all.Margaret from Florida.💝😀
So glad you're home, love you guys so much!
Makes sense thanks for clearing that up. Everyone that flows you loves you and only want you to be happy , seeing you so sad and in pain freaked us out. Of course we understand not every day is wonderful but we love you and the world wants to give you a great big hug love you Mary Peter and olli xoxox
Congratulations on your homecoming! Glad to see things are looking up, and as always God Bless you both 🙏🏻
I know this is way in the future (JPEG) but you might consider regional anesthesia rather than sedation for placement. A spinal or epidural (like what is used for C-Section) might be a safer option for you. (Although I hope you are able to get more stable and not need one at all :)
Thank you for addressing the question about the J tube- I was kind of thinking you wouldn't do it since you were hoping that the extra feedings wouldn't be necessary for the long term. You're so strong Mary! Keep it up!
Hey Mary, you are so strong. Keep on fighting. I admire you very much. I watch your videos everyday and pray for you.
So glad you are home Mary 👏🏻🐝🙏🏻🐝👏🏻🤗
You may not feel much better, but you look much better. Praying for you ❤️
So happy that you are home. You both are too cute together. Praying for you all daily. ♥♥
I think with all the lack of nutrition that Mary has been dealing with major malnourishment and when there is a person is malnourished they have major problems.
Mary, I'm so happy you're feeling better! And I'm happy that you're fuel is absorbing well too to give you the nutrients you need to help you gain weight and give you what you need to get back on track.
Peter and Mary, I'm so glad that you guys are staying positive and trucking along!! That's so amazing.I HAVE A SUGGESTION :D Could you put "Don't forget to laugh every day" back in the intro? I forget and it's so lovely to have a reminder, especially from you guys. Much love. xoxoxoxo
So glad you are home and I pray everyday gets better and better. Much love to you both :)
Yay!!! I'm so happy you guys are back home!!! Sending lots of hugs!!
Welcome home sweet girl.. You seem better already. You needed that fuel.
janet stauffer oooiijjiikiii
Hello Mary and Peter!
My name is Stephanie and I just wanted to give you guys a quick hello. I just recently found your vlog and have been following your journey for about a month now and I already love it! Your positivity and fun life style is inspiring and motivating. I live with a stomach disorder called gastroparesis, so I resonate with some of the troubles of living with a chronic illness. Your videos help bring some sunshine to my days and remind me to fly when I can't walk on the tougher days! :)
Thank you so much for sharing your story, love, and life with us! I know if you can face your illness I can face mine.
P.S. My anniversary with my bf is also on Jan 8th, how cool is that
Happy to have you home!
I'm so happy you are home ❤ I love how you are positive in everything you go through. Strong Woman❤❤
I highly recommend using warm (not hot!) water when you flush your tube. For me warm water has been more successful at preventing my tube from getting clogged. Also if you look online there are backpacks made specifically for Infinity pumps and it makes it easier to access the pump if it starts to beep. Good luck adjusting to your new tube and I really hope you don't need it long term! If your throat is sore I recommend the Cepacol cough drops that have benzocaine because they help numb the throat a bit. It doesn't completely eliminate the pain but it has provided me with some releif. Also when you're priming the tube if you put a clothes pin where you'd normally hold with your finger it allows you to do other things while you wait for it to prime. Just make sure to put the end into an old fuel bottle or put it into the pump bag so it doesn't leak on the floor if you forget about it for a minute. Sorry for the lengthy comment but my heart goes out to you and I'd like to share any knowledge I've gained from experience that I can. You are all in my thoughts and prayers! Sending lots of love to you!❤
I'm so glad you got to go home Mary and Peter. Love you so much I enjoy watching your video everyday.
So happy to see you home. Sweet dreams💕