Feeding Tube * Supplies * Daily Life * GTUBE * Tube Feeding Information
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- čas přidán 20. 07. 2024
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#feedingtube #tubefeeding #scleroderma #gtube #feedingtubesupplies #chronicillness - Jak na to + styl
Kayla i never realized how complicated everything is to have a feeding tube. Never mind the time and expense. You are a very strong women.
KAYLA PLEASE READ♥♥Kayla ask your creative sons if they can come up with a way you can connect a pole to a small cart of your choice you can push around the house to move things you need to move, and the pole can hold your bag and can connect the pump but needs to be out of your way while pushing your cart. I feel in my heart that if Jody and those smart young sons put all their creative minds together they could come up with the idea cart for Mama Llama Kayla. I have seen poles connected to a wagon for kids in the hospital, so why couldn't your clever men come up with a Llama Mama contraption just for you♥God bless, be safe and stay well.
My sister has a backpack she uses for here pumps and bags. The issue is finding a bag big enough to fit all of it in.
Miss Kayla, ty for info. Your endurance is amazing! Insurance should pay for ALL your supplies and FORMULA. Mind boggling they don't. May our Lord help you❤✝️✝️✝️
I can only think they dont pay for formula cos they figure you'd be buying food ... but I imagine formula is far more expensive
Kayla, I'm praying for a Spiritual intervention that all your medical and special food needs be met very soon. You are such a beautiful 💛 lady inside and out. I look forward to your videos 🌻
This whole process is so complicated. I don't know how you find any time to crochet. All of this just proves what an amazingly strong woman you are! God bless you.
Bless you, Kayla, it takes a lot of courage and fortitude to do what you are doing a.k.a. sharing with everyone. Knowledge is power and we all learned something today. Thank you and God bless.❤❤❤
Miss Kayla , you inspire me to be a better person. God bless you 🙏 i always have you and your family in my prayers 🙏 ❤
Thanks for sharing with us Kayla. You sure have to go through a lot of stuff.❤
You just refuse to quit. I admire your determination and will. It is always good to share information, so others can better understand what is involved with your condition.
Kayla you are the ONE!🎉
My sister-in-law is retired now but was a nurse. She specialized in geriatric nursing and in that capacity worked with many many patients that also needed feeding tubes. She said that one way of leakage was the balloon not being full enough of water. Has that ever been suggested?
Your supplies remind me of my late friend’s dialysis supplies. My girl friend gave her husband home dialysis so also needed home delivery of many boxes.
Kayla you are so giving, thank you.
Thank you for showing all of us what it means to have a feeding tube & what all you need to take care of yourself - I had no idea !! Bless you !! 💕💕
Ms. Kayla, thank you for sharing this information. I know there are so many people whom know absolutely nothing about what is involved with feeding tubes. It is very time consuming and it takes honest dedication which you shared so freely. Again, Thank you and may our Lord continue to bless you and your family ❤.
Thankyou Kayla for giving a demonstration on that. ❤ My mom had a feeding tube. Im sure it helped explain what people go through with that whole procedure.
You are the strongest person I know! Love your attitude! It’s contagious! Hope Big Daddy is feeling better.❤️🤗🙏 for you both!
Im 26 yo, diagnosed with autoimmune hepatitis when i turned 21. Im always trying to avoid stress and anxiety because im terrified of turning yellow again. Seeing you carry your burdens with such a bright smile gives me hope and confidence. Life has tried to beat you down, yet here you are, crocheting happy little creatures in defiance of that. You inspire me. 🥹
What a great video. I’m a nurse and dealt with so many feeding tubes. The information you gave was so helpful to anyone who has a feeding tube and needs to understand how to care for it. You are a wonderful lady and a great teacher. Love you and God Bless you 🙏🙏❤️❤️
I was listening to you as I was working on my ‘row one’ granny square blanket and you opened the box with the syringes in. I almost spit my tea out… we were making thanksgiving dinner and I needed to baste the turkey. I realized that the previous year we tossed the baster I had. My daughter being very creative pulled out a syringe from my grandson, when he was alive. She saved a few and gave me a new baster, but every time I use it I do remember my dear grandson Noah who passed away at 17 months and 1 day. 💜👼🏻
I too never realized just how much you have to go through with a feeding tube. I have a good friend who has Chron's and has some kind of tube/pouch that she has to deal with constantly. You always have such a positive attitude. I am certain your video is helping so many others.
❤Love and hugs 🫂 to you and Big Daddy. Prayers for your health 🙏.
We love you, miss kayla. You know i think when god was handing out personalties he gave you the giant version. Or extra helpings.
Kayla, you are without a doubt one of a kind tough cookie.
God must be on your side.
Thank you for this educational video. I never knew what was all involved in feeding tubes and certainly more complicated than I ever imagined. Have a blessed day.
You are correct about insurance!! We pay them they need to realize they work for us. Ty for sharing your life with us here. Prayers always 🙏 for you.
I appreciate all the information you provided, Kayla. I had no idea that a feeding tube was so involved.
As a result of cancer and radiation, my sister must wear a bag for urine and a colostomy bag, so she deals with a lot of the issues you mentioned. She has many supplies to deal with also. It’s wonderful that modern science has made these products available. Dealing with them is another matter and it challenges one’s patience and determination.
❤️✝️🙏
Having been a R.N. for many years and have cared for many a feeding tube, so I do understand what you go through. You are an amazing woman and such an inspiration.
Insurance is such a pain in the butt, and I'm a medical biller who deals with them all day long fighting for our patients. My suggestion for you when it comes to your formula is to have the person at Big Daddy's job in charge of the employees benefits is to call the insurance company and get an underwriter added to the policy so that you can get it covered, even if it's a portion of the expenses.
Bless you sweetheart. You are so awesome to open your life up for the benefit of others. People who are facing having a feeding tube can get the information they need truthfully.
All i have to say is you have a great attitude . I dont know how you keep a smile
I am sure someone needs this video. Thanks Kayla.
Wow! This was a very interesting and informative video, Kayla. You weren’t kidding when you said having a feeding tube is very time consuming, expensive and😊 restrictive. It makes me so angry that insurance companies won’t cover your supplies! As you said, “Insurance is a racket.” I have always admired you for carrying on with all of your various diseases. Now I admire you even more after watching this. Thank you so much for educating us on living w/ a feeding tube. 😍
I definitely understand how much work you have to do. My husband had a colostomy bag on for quite a few months and it wanted to continuously leak and later on had a wound vac. Both required quite a few changes and fixes. The one surgeon asked if I was a nurse since I did such a good job. I said no I just did what needed done. I understand how insurance companies can be. My husband was in the hospital for many weeks getting his feedings through the iv. Insurance wouldn't pay for it to be done at home so the doctor said okay they can pay for a longer hospital stay. Finally he came home on light food. Insurance can really be a pain in the tush. You're a very strong person with Jody by your side. Hugs and love to you both. 😇🤗🙂
Thank you for sharing this information about your daily routines. You are an amazing and strong woman. It takes a strong person to go through everything you have to do daily and that’s definitely you Kayla. God bless you and your family. 🙏🏻💜
Really good info for the healthy one's of us who have no idea all the things some have to go through to get what we take for granted wow you are such a strong person : )
I knew there was a lot involved but, I had no idea exactly how extensive it really is! My heart goes out to you💗
You are an extremely strong, positive woman!💝 Thank you for educating us.
God's blessings to you always 🙏🏻 Wishing you a beautiful blessed day 🙏🏻😊💖🌻🌻🌻🌻🌻💛
Wow, I had no clue about any of this. How do even find time to crochet and make the videos. You are amazing!
Kayla you are an inspiration to me. When I am feeling down. I think and pray for you .🙏 The info was wonderful. Hugs and prayers. God Bless 🙏❣🙃
Man, you are so amazing… and so strong… Youbare an inspiration to us all…God. Bless❤
DIOS TE BENDIGA HERMOSA MAMA KAYLA TE ADMIRO ERES MUY FUERTE ABRAZOS
You have such a wonderful spirit even with all the Medical Diseases!!!!!!! You are always in my prayers 🙏❤💛
I have lots of the flushing syringes that I haven't been able to ship due to my income being $600 a month. I will try really hard to get them shipped soon!!!!
It’s very sad that insurance and medical expenses are so expensive. Seems like you can’t afford to be sick. I’m glad you showed the process you go through, we often forget how strong people with illness really are to go through all they go through.
I remember colostomy areas that get the raw skin areas around them. N I've seen feeding tube sites get inflamed ,but can't remember if I've seen one as bad as yours. Thank God ess you can take care of it yourself. I truly wish you didn't have to go through all of this.❤
Thank you for sharing and you look so pretty in your lovely flowered top! ❤
This is so wonderful of you to post this information. I am not sure myself, but there is probably not much out there and people will get a lot of help watching this video if they are needing a feeding tube. May God bless you Kayla!!
Wow Kayla! Your feeding tube is a very complicated process! I figured it wasnt easy to manage the process but had no idea it was as complicated as it actually is!
My prayers go out to you!🙏🌻🌻
Hugs Kayla. I'm praying for you!! You are an amazing person. Thank you for being real with us.
Thanks for sharing, Kayla. So sorry you have or to deal with this. Many blessings and prayers sent your way.
Dear Kayla you are one of the bravest people l know. Such beautiful spirit. Sending my love and blessing to you from Mary in Ireland 🕯🕯🌷🌷
Dear Kayla from my home in Wicklow Ireland to your home in Louisiana USA sending my love and thanks for your heart shaped thumbs up. Just sitting here crocheting just like you my good friend. I watch all your videos Kayla 🌷🕯🕯🌷
This was very interesting, Kayla. I didn’t even realize all you go through. You’re a wonderfully strong woman. Thanks for sharing! Have a great day!!❤
Thank you so much for sharing the ins and outs of your daily life. So many opinions but no one understands your daily struggles. Only you can understand what the best solution is. It's sad that insurance does not pay for the most needed items. I appreciate you explaining this in detail because we never know when this information will be needed in our own life. Blessed day to you all and continued prayers. 🦜
you are an amazing lady!!
Thanks for sharing & educating us all about your feeding tube & all that goes with it! There sure is a lot of paraphernalia you need for it! My Dad had one but his was more basic than that & so I often fed him with it before he died. I had a teary moment remembering all he went through with it when it got infected! I hope & pray you continue to find better, more comfortable, easier & cheaper ways to do everything that's needed. By the way, I was super impressed with how well your left hand is doing cutting now! You constantly inspire me, Kayla! 🥰 Blessings from South Australia💕🐨
God bless you. I admire your courage. Said prayer for you. Much love.
Wonderful Lady. Keep on Carrying on! You are so strong.
Love you always❤
I am sure you have helped people today ♥
Kayla, thank you for sharing your life issues along with yarn. ❤
I love that shirt 👕 😍
Kayla, I am so sorry you have to deal with all of this and that your insurance company won’t cover all the costs😢🫂 I really feel for you and what you have to go through. My late husband had to have a feeding tube. I took care of all the flushing, feeding, etc. He had ALS and the first area it attacked was his esophagus. You are right about once you have one autoimmune disease you get another. He also had lupus and though it hadn’t been diagnosed, I’m pretty positive he had Raynauds as well. One thing we found worked well was to set his feeding tube to run overnight. It saved a lot of hassle not to have to bring the pump and iv pole with him. Especially if he had a doctor’s appointment later that day. Anything to make it easier. Sending you lots of healing energy, prayers, & hugs your way🫂 Cheers from FL😺
My late husband had a feeding tube, I'd get up every 4 hours to feed him. He was a Veteran so his formula & supplies were covered, but.we didn't have an IV pole or pump. He also had tracheostomy for oxygen through his neck. I had to change that out myself, while he turned blue. Hard times. My daughter had IV pole, Medicaid supplies, plus in her final days, a morphine pump strapped around her. Ovarian cancer, age 37.Too heartbreaking to describe.
First of all, thank you for sharing your personal medical status. Secondly, although I do have medical issues too, LET ME COUNT MY BLESSINGS! It’s true God only gives you what you can handle. Blessings your way!
I had no idea of all that is involved in having a feeding tube! It's a wonder how you keep it all together. Very informative video. You are an inspiration to us all. Thank you and God Bless💕🌹
God bless you Kayla. 💕🙏🏻
Bless you Kayla
Bless your heart I had no idea. Thank you for sharing.
Wow that's a lot of stuff I'm praying for you and big daddy
Bless you Kayla ❤
Bless you Kayla🙏🙏❤️❤️
Great great great information. Thank you for sharing.
You are a bloody amazing lady I love you xx
Prayers and love
OMG Thank you for sharing Kayla. I never knew you had to do so much for your feeding tube. But apparently you got it girl! :)
Hello Kayla, I ❤ love watching your awesome videos, greetings from CAPE COD MASSACHUSETTS
I love that top on you. very informative video. thank you for sharing
Thanks for the information, Kayla. I never knew how much work goes with having a feeding tube.
Im so sorry you habe so much trouble. Youre the most delightful human being.
Thank you for the information on this it was a great video too get educated 😊❤
Hey. Thanks for the info. I worked in home healthcare for 15 yr. in the 80's and 90's and I'm all about education. I was diagnosed with MS (multiple sclerosis) and things are much more difficult due to people's ignorance even though the info has been out there since the 80's here in Jackson, MS. I was personally involved with trying to educate the public and get laws pased to benifit the disabled.
I am so glad that you made this video. I had no idea all that you need, I wish that your insurance paid for more supplies and your formula.
Thank you Hun for the info, I think your insurance should pay for all your supplies that you need but I so understand insurance issues.
Hi Kayla....it was very informative. Thanks for sharing. 💛💛🙏🙏🙏🙏
Kayla, wow 😮 this is a lot that you have to do for your feeding tube. I pray that the Lord continues to strengthen you and I pray that insurance will do better for you. That is crazy that they won’t pay better on supplies or anything on your formula.🙏🏾🙏🏾🙏🏾❤️
You could take the feeding tube connectors and craft with them lol. Glue yarn to them to make little trees or use them for legs on a trinket box
Prayers for you and your family
Thank u for sharing 😊. My youngest son had a gtube ( mickey button) for the first four years of his life. He had severe reflux with a dismotility disorder. He had a nissan fundoplication at 6 months old. By the grace of God he no longer has the feeding tube and is a 6'1 tall 22 year old healthy young man.
I'm very familiar with most of your supplies u showed us. Bless u and stay strong with all that life has challenged you with. You are an amazing woman ❤️
Very interesting what you have to do for your feeding tube. Thank you so much for sharing. A friend and I were discussing this the other day and I told her about you. This was perfect timing!!!
I have had 2 feeding tubes due to having throat cancer and had to have 1 at beginning for the surgery and recovery, and 2nd when I went through radiatation our Insurance was same so I used a company named Real Food Blends It was started by and husband and wife for their son It is real food blended to point where it will go through the feeding tube. I no longer have onebut I feel if I ever needed one again, I'd be okay with I fought and fought it but have come to see that now itsnotgoing backwards its just what you gotta do ro live. Thanks for sharing what you go through on a daily basis.
Thanks for sharing you have to go thru alot of work.I didn't know you need all those supplies Everyday. insurance Companies should pay attention to people on how much they have to pay out of pocket.
idea for cart is PVC pipe. Have you seen chairs for kids made from PVC pipe... Just an idea guys. Like Deborah says get creative guys.
You are a trooper ❤ 🙏. Your top is so cute.
Ohh sweetie I’m so sorry you have to go through this everyday, I have enough trouble putting up with Rheumatoid arthritis,fibromyalgia and chronic gastritis and lactose intolerant and being legally blind love and hugs always
Kayla my granddaughter was 4 when her feeding tube fell out and her mommy was out of town. She proudly brought it to me and said Nana look! I put a bandage over it and dressed her when the dr’s office opened I called and took her in. Dr said it was fine I did all that needed to be done. Ok but what now? Oh it’ll just grow up.
Very informative video. You are so strong thru all you have to do daily! I wish there was some way they would supply all you need. I love your top! You look so pretty in it!😊❤
Maybe you can contact the company that makes your supplies and see if you can get assistance with cost or even a discount program or card. Never hurts to try. Hope you can get some assistance!! Insurance companies and pharmaceuticals are ridiculous anymore. Thanks for sharing! ❤😘😊
There's way more to it than I thought Kayla, thanks for sharing the information. I hope everything went well with the ultrasound.
Hi Kayla! Wow you have to deal with so much! I’m also thankful they have the technology so you can get your nutrition but I’m heart sorry you have to deal with all that and your insurance is worse than useless and it comes out of your own pocket! How maddening! 💛
You are such a special girl! Love and good vibes from Hot Springs! Have you ever been here? It's a beautiful National Park!
You can use the ends to pull liquid meds into a syringe to go through the tube. From a tubbie family member
Thanks for sharing your feed tube.. because I not know anything about feed tubes
Hi Kayla. Nice informative video. I know of what you go trhough as my stepmother was on a feeding tube due to radiation issues due to her cancer. My brother inlaw took care of her feeding tube needs which was great. It's a shame insurances are expensive to have but pay very little on some things.
Take care.
Kayla you are an amazing strong woman🙏🏼 thank you for info.. sad that insurance doesn't pay all for supplies... God Bless you❤🙏🏼
I found this video very informative.❤❤❤
I can explain! The white adapters used to come attached to the feed bags, as you said. But they are now making PEG tubes and G-button extension tubes that have a luer lock instead of a slip-tip. So some patients can now screw their feeding bag directly to their feeding tube without the use of the white adapter.
Oh wow. I did not know that. Thanks for telling me. I like the idea of screwing it on. Sounds like it would hold better.
Hi Miss Kayla, big daddy, fellow crocheters and watchers
I hope you're all having a great day.....
How's Elijah's restock coming?