Unsure Over Big Feeding Tube Decision 😓 (11/27/17)
ฝัง
- เผยแพร่เมื่อ 27 พ.ย. 2017
- NEW TO CHRONICALLY JAQUIE? START HERE!
- All About My Chronic Illnesses - • Video
- All About Harlow - • All About Harlow! 🐶
- All About My Port - • All About My Port! ♌
- All About My Infusions - • All About My Infusions! 💦
- Judd and Jaq Relationship Q&A Vlog - • Valentine's Day Relati...
--- Skip to 7:03 in the Vlog to watch the Relationship Q&A section!
- “New Here” Playlist - • New to Chronically Jaq...
YESTERDAY’S VLOG - • 🏥 ER Trip | My Feeding...
MY PATREON PAGE - / chronicallyjaquie
MERCHANDISE:
Teespring handles all production, shipping and customer service (thank goodness, lol). The campaign is ongoing. Both blue and pink accents come in a V-Neck option (size XS - 2XL) and normal neckline option (size XS - 5XL). Part of the proceeds are going to Red Cross. I hope y’all love them as much as we do!
PINK SHIRT - teespring.com/chronically-jaq...
BLUE SHIRT - teespring.com/chronically-jaq...
LIKE WHAT YOU SEE?
- VogMask - www.vogmask.com/
--- I wear the mask due to my Angioedema and Immunodeficiency, it filters allergens and germs. Learn more in my “All About My Chronic Illnesses” video!
- Infusion/Feeding Tube Backpack (Use the code “Chronically Jaquie” for 10% off. I had mine professionally tailored by a seamstress to accommodate my feeding tube.) - vibedration.com/
- For more info on raw diets visit Janiece’s Channel - / @therawlife1
- Primary Camera (Canon G7 X Mark II) - shop.usa.canon.com/shop/en/ca...
- Secondary Camera (Canon SX620) - shop.usa.canon.com/shop/en/ca...
- My Editing Software (Filmora) - filmora.wondershare.com/
NEED MORE CHRONIC ILLNESS OR SERVICE DOG INFO?
- Chronic Illness Support Playlist - • Packing For the Hospit...
- Service Dog Support Playlist - • Service Dog Support
- Training Tutorial Playlist - • Training Tutorials
- Feeding Tube Playlist - • Feeding Tube/Gastropar...
- Custom Wheelchair Playlist - • Custom Wheelchair Play...
- Pain Management Playlist - • New Adjustable Bed for...
- Other Helpful Playlists - / @chronicallyjaquie
CONTRIBUTE CLOSED CAPTIONING/TRANSLATIONS!
Help me make my videos more accessible by contributing closed captioning or translations! th-cam.com/users/timedtext_cs_p...
FOLLOW US!
- My Instagram - / chronically_jaquie
- Harlow's Instagram - / helper_dog_harlow
My Patron Executive Producers: Danielle Smythers, Karen Ratcliff, Jaime Heiner, Elizabeth Smith & Phillip Casey!
Having two feeding tubes means you can wear two tubie-pads a day!
Harmony Scheidt that’s what I️ said before I️ read this 😂
I had the same exact thought!
Jaquie, thanks to your wonderful attitude towards health concerns I was inspired to go back to my doctor again to have my health concerns addressed. It turns out that I was feeling so sick partly due to an interaction between two of my meds that was affecting my heart. I am starting to feel a lot better.It's all because you gave methe courage! Thankyou!!!
Whoa, Vicky, that is scary that you had an interaction. I would have hoped that if not your doctor, then your pharmacist would have caught that. Either way, I'm glad no real harm was done and that you are starting to feel better. Take care!!!
Which meds?
I’m glad you’re waiting to make a confident decision and not rush into it. Your ability to self advocate for yourself is so awesome, yet you still value the opinions of your loved ones. Keep fighting! I know the right option will be here soon for you
God will guide you, Sweetheart. My daughter and I are praying for you!
You have proven time and again how strong you are, so do what makes you happy, gives you a better quality of life and a better experience. You are in the thoughts of this warrior.
I had a GJ placed in August of 2012 and had them separated in July of 2014. I have gastroparesis and full small bowel and colon dysmotiloty as well. I started TPN in the fall of 2013 after I had tube feeding formula backing up into my stomach from my J portion of my GJ even when it was in place and at a rate of 10ml/h. We hopped by placing a Mickey J tube with the long tail on the end (can be as long as 45cm tail) we' get far enoughh into my small bowel to prevent reverse motility and allow me to wean off TPN. I was able to get down to 5 nights of TPN for awhile. The surgery for the J tube wasn't horrible after I got over the ileus (took a week). They placed low profile tube right away so I ddn't have a long tube right off which was fabulous.
If you continue with the gj placement ask for a back up g button. You can take out the gj and replace it with the g so at least you can vent. Since its a simple g placement you don't need sedation.
We have a back up g for my son's gj for emergencies like kinking
This is such a helpful idea. I would not have thought of this (I don't have a tube, but am learning). If it isn't a good idea for Jaquie for whatever reason, you may very well have helped someone else with your idea.
I'm sorry your having such a hard time with your feeding tube :( I have to agree that YOU need to be at peace with your decision, and I will keep you in my prayers that you come to peace soon with what you need/want to do, Your an amazing woman and I for one am thankful for all that you share with us! Even if someone is not chronically ill you provide so much information, and show how much compassion means especially when you have an invisible illness so thanks again to you and your family I love your vlogs 💖😚❤🎀
I am so impressed with how you are praying through this until you have peace with how to proceed. Far too often I allow others to persuade me into actions that are not necessarily best for me. Thank you for sharing your process of making the best choice for you. I'm keeping you, your family, and your medical team in my prayers as you continue on this adventure.
Sending love and praying that your find peace in whatever decision you make. We are here for you always. If it wasn't for you I would have never gotten officially dxd with hEDS from mayo clinic. Everything you do in sharing your story and spreading awareness, you're truly an inspiration ♡
I'm praying for you! Thank you for being such a kind soul and giving some of us the strength to keep going!!!
Maybe make a pros/cons lists for keeping a gj and separating. Might help make the decision easier? Just remind yourself you WILL make the right decision and if the one you choose doesn't work you can always go back. It's going to get better. You will get past this. Just keep fighting!!!
You handle all these issues with Grace and determination to get through it no matter what. You are a very inspiring individual. Thank you for sharing your life with us.
I also have EDS type 3. and i am a mom to a handsome little boy named Hunter he is 2 years old. and we watch your videos all the time together. just wanted to let u know we are thinking about you and we are sending prayers your way get better soon. and give Harlow loves for me. We love you
We love you guys! You’re so strong. And you will figure this feeding tube dilemma out! Just another small bump in the road. We’re all rooting for you ❤️
Jaquie, you forgot another pro: you can use 2 pretty matching designs for your feeding tube pads 😉. Whatever you decide, you will always have your family with you.
Keep hanging in there girl. It's all worth the struggle to make things best for your health! You've got family and God looking out for you.
I think you're definitely right about having a better perspective once you have the surgical consult. Having your questions and concerns answered by the surgeon is the best way to gain peace through knowledge.
Decisions are definitely hard, and I think that you’re approaching it in the best way possible. You’ve got this. I keep pushing through health and chronic pain issues because you inspire me. Thank you. Positive thoughts your way ❤️
It's great your care team is able to work with you so quickly and efficiently when things come up! Hopefully whatever option you choose ends up making your life easier in the long term.
Praying for you Jaquie! You have so much courage and are such an inspiration to so many! I’ve been following your blog and can’t thank you enough for your positivity and for sharing your story. I’ve been legally blind my entire life, and have been dealing with a few chronic illnesses since 2011.
Prayers for a confident decision.
I hope everything goes well and I hope that you can get the help you need with feeding tube issues soon
Hi Jaquie!
I understand your family and doctors wants but I’m glad you’re still deciding what you want. It’s your body after all. I’m not one to comment all the time but I’ve been watching since just before you got your feeding tube. You are very inspiring. To see you fight every day is so inspirational. Thank you for all you do
So lucky you have so much support thru all your illness issues....it’s very tough to go thru crap mostly on your own and having to financially fully support yourself. Bless your family!
I love you Jaquie! Praying for you and have been thinking about you a lot lately! I know you will get to figure out which tube is the best option for you!
You’re so incredibly inspiring even when you’re so human and frustrated coz the kinked feeding tube honestly just sucks. But you’ll pull through as always. Hoping you keep well and get better ASAP! Praying for you and sending you lots of love ❤️
God bless you and your family have a wonderful holidays....you give all of us chronic pain Warriors great spirits and hope!
Good luck with your feeding tube troubles Jaquie!! I know you'll make the right decision!! You can do it!! Thank you for sharing your story and spreading awareness!!
I hope you're resting easy... I've come to look for advice from your videos, you always knew what to say, and have always helped me through my own illnesses. Wish i could've heard your words in real time, i could use them right now. Always here with us❤
Glad you don’t have to wait too long. Hope that this one will endure a lot longer then your current one. Stay strong fellow POTSie
I too have some chronic illness issues. Watching your channel inspires me to keep going and keep up with my treatments and mental health care. Few people realize that taking care of yourself also means maintaining your mental well being as well. Good luck with your decision and hope you feel better soon.
I hope you're feeding tube issues resolve themselves quickly. I can feel how frustrated you are and I can understand why and I just want you to know that I'm rooting for you and sending you prayers and hopefully things will turn out better.
You are a warrior. Thanks for sharing your life
Jaquie, you’ll know what to do when the time is right. I get that you must feel very frustrated and unsure about all of this. However, I’m sure you’ll make a good decision. I wish you all the best of luck with everything that’s going on. Hope you’ll feel better soon. You really inspire me to make the most of each day, thank you for that.
Continued prayers for you. Praying for guidance and HIS wisdom in this current situation. Keep fighting. You’re such a great inspiration and encouragement to so many!
Oh, is that a new backpack or am I late in noticing? :O It's gorgeous! I love the pattern!
Much luck with your tube Exchange. Kitty and I will be praying for you. We'll be adding you to our prayer list at church. One can't have too many prayers. Can't wait to hear how things are going. Best wishes and hugs,
Donna ❣Kitty 🐾
Try something different texturally for the decorate pillow, like a silky pattern on a tube pillow :D Your bed is gonna look so pretty.
I always find that writing out worries/issues with any large decision helps immensely. I know that many people find writing therapeutic. It's cool that you do this too! I don't feel so weird now :) Also, at my school we started giving out gratitude journals, where you spend a few minutes a day writing down the little things that you're grateful for. It actually has been proven to help with sleep, which is interesting! I just thought that it was a cool idea. I am so thankful for your videos, and the community that they provide. Everyone in the comments is lovely and supportive, which is so refreshing!
I'm sorry you're having to continue to deal with this. I know that eventually you'll come to the best conclusion for your body and your journey. I hope things work out so you can have some nice, relaxing time with your family this holiday season without any tube issues. Much love from NY!
im always amazed that harlow seems to know what commands youre going to give her before you say them!
hang in there, im sure you will find a solution to the feeding tube dilemma soon
Harlow knows often what Jacquie will ask because for things like her tasks before eating she almost always does, spin, namastay and often speak. My dog was like that as well. Before giving Max a treat he would always be doing a wave. Before that it was always a roll over. Usually whatever trick he was learning at that time, because I usually asked for it first. Earlier this week Harlow did a spin for her food before Jacquie even asked for it. Because of routine. That is partly what makes dogs good for training.
Praying for you sweet girl. I'm battling major health issues right now & I totally understand having peace with your decision. Take your time & listen to the Lord, He will direct you. Praying for clarity for you & your medical team. Lord Bless you.
I hope you are feeling better soon too.
I totally understand what you mean about needing to make the decision for yourself. I did the same in making my port decision and had some people telling me to do it and some not. I ended up making the right decision for me. I hope your appointment helps you make one 🤞 was really hoping they would get you in before Thursday, but then I thought maybe he had to order the button again?
Much love
I will definitely be praying for you. What ever decision you make regarding your feeding tube I’m sure it will all work it’s self out. ❤️
I’m sorry this happened again/:
I know you said it’s inevitable but that certainly doesn’t make it any easier..
I’ll keep praying for yah! Especially that you’ll feel at peace with whatever decision seems to be the best option for your situation & what will help give you relief in the future.
Love you!!❤️
You are awesome. Things get you down sometimes but most of the time you are a strong trooper. Praying for you to make the right decision for you.
You are absolutely right to do what you have to do, in this case meet with your GI doc and have the consult, to have peace and confidence in your decision. Your family is coming from a place of love and a desire to see you have an easier time with things and less frustration. We all love ya, Jacquie and whatever you need from us, whether it is support, suggestions or just a forum to get your information out there, we are all here because we want to be. Because we care. Take it easy over the next few days and I'll put in a good word for you with the Big Guy tonight when I say my prayers! xo Heather🇨🇦
I love the fast music when doing your IV fluids. Especially when it synched up and you flipped the two caps off the vitamin bottles. Good luck my dear. And stretchy Harlow!!
much love sending your way. i really hope things get better for you also keep taking care of you!
Tools to have open freedom. That's what you've taught me. I started watching you this year. My knees buckle, my body spasms, and my PTSD is so bad that at times I lose feeling to the world (literally in a ghost state). I used to avoid my cane so much that I would have to sit several times to just make a block. I used to avoid needing a walker so bad that I would invite crawl from one room to another. I used to avoid pain medicine so much, that I would be unable to move with painful tears (the ones that just fall, but not really emotional). Growing up, crying out or showing any pain was attacked by my mother, saying I was too young to hurt. But she was blind to the fact that anyone could feel besides her. I tell you this to maybe help you. I use the walker, I use my cane, and I'm more open to pain medicine when it's hard to move. I let myself take days off from chores, and I let myself rest. I'm finally beginning to be okay because instead of those things that scare me or originally made me feel like a failure, are now tools for my freedom. With your kinking, remember to listen to what would make you feel free, and even if it is scary or hard, it's another tool and another chance for a bit more freedom. I support you either way, and will be here with you (even though you don't really know me hahahahahaha....) because you supported me without even knowing it. (I'm also trying to figure out a way to go to the doctors again, fight for them to listen this time.)
For survival situations, I've always heard the "3-3-3" rule is a good one to follow. you can live 3 minutes without oxygen, 3 days without water and 3 weeks without food. These aren't hard and fast rules, for example, in a hot dry climate the 3 days without water is not realistic. In Death Valley in the summer hou can die in HOURS without water, which is why they say to take 1 gallon per person per day even in the car, because if you break down it may take more than an hour to get help. You'll need that water to survive.
Keep your head up, Jaquie!! 💞 love you and Harlow! 🐾
You and your doctor's will come to the right decision for you and your needs. Please just take care of yourself and i will keep you in my thoughts and prayers that everything will sort itself out. Love your family and videos. I am also going through rough times with health problems so I can understand how you feel about it. Take care and God bless you all lot's of love from me kelli xxxxxx
Much luck with your tube issues. You know whats best for you. Kitty and I will be praying for you. Will have you on our prayer list at church. One can't have to many prayers. Lol Best wishes & Hugs, Donna ❣ Kitty 🐾
An old door with interesting features painted an orange/terracotta color would look lovely as a headboard. You seem attracted to blues/oranges, love the backpack. And a throw pillow with different texture will add interest. As for making decisions I make sure I have all the information then sit with it. Mull it over, listen to advice but ultimately go with my gut. I do this with my health decisions and it's how I parent too. If I'm at peace with the answer then it usually is the right thing for you. You have a future as an educator. You are clear, concise and very well spoken. An a positive role model for those of us with the invisible health issues. I have no worries you'll work this out just fine. Xox
Go for it!
It is worth the "risk".
Having two tubes will eventually give you so much more will to live and go on.
We all know how no nutrition is making you more sick than you already are!
You take SUCH GOOD CARE of your current stoma and I'm SURE you are able to take care of another stoma too!
I can understand how you feel, but I also respect your choice. We all think you can do it!
You are such a strong woman to all of us. You give us hope, you show us what dedication means, and you show us what love means!
Thank you for making these videos, Thank you for giving me strength and a will to live!
I really hope you'll find peace with the decision you take for your feeding tube and wish you a lot of rest and energy for the next few days! I'm really sorry you have to deal with this and keep going!
I have no idea what you are going through, but you inspired me to get a service dog, and helped teach me so many different ways my STiD, Holly, can help me with my disabilities. Thank you for all of your help, even if you didn't know you helped change my life for the better, and helped me keep moving forward.
I'm praying for you Jaquie. I'm so sorry you keep having so many health issues, but I know that God has reasons for everything we go through. You are an inspiration and your vlog is a blessing to quite a few people. God bless you and your family!
I get how big and scary the whole operation is, and I definitely understand and support you need to be sure 100% that it’s the right choice for you.
I also get why your loved ones feel you should get it, because I feel the same way: it’s scary to see you go without nutrition for several days when your body needs it so desperately to keep on fighting all of your chronic illnesses. And I’m also pretty sure it’s even scarier for them because they witness all of it in real life.
It’s also so frequent... there must be a solution, wether it’s two feeding tubes or something else, that makes it more manageable. Because no in itself you being off feeds for three days isn’t life threatening, but I feel it gets to be an urgent situation when it happens almost once a month and messes with your body this badly :/
In any event, I have no doubt you will find a way to deal with this!
My thoughts and love to all of you
I’m praying for God to give you peace in the tube situation. I myself was in the position you were in and I had no choice but to separate my tubes. It’s hard and rough but in the end it ended up easier for me personally. Harlow is adorable and keeps you great company and is a great service dog. She’s amazing. Keep on fighting and Praying on this. I will have you in continuous prayers.
Jaquie, I personally do not suffer from any chronic illnesses, but your vlogs inspire me to keep my head held high no matter what comes my way. Watching Harlow being the adorable pup she is always makes me smile. Whatever decision you make regarding your tube, I hope it will benefit you.
Hang in there! Hopefully more information from your doctors will put your mind at ease regarding what decision you choose to go forward with. I know I've felt the same way you are describing with some of my treatment options and eventually things do get worked out. Praying for you and hoping for the best!
We love you Jaquie, and I hope that you can make a descision that you are at peace with!
I whole heartedly believe you need to feel its the right path God has chosen for you in this decision. You are an amazing lady
Keep praying for peace and clarity - it will come. I am very seriously ill and when I am unsure about going through with a medical decision it usually means a forced decision is not the right one. Take care
Take peace in the fact that you will make the right decision, because you will make it. It just takes time.
Love watching your vlogs everyday! Always make me smile
I hope you'll be able to figure out what's the best decision for you to make soon. You're so brave for going through all of this, I admire you so much. I wish you the best :)
My gastroparesis causes a lot of nausea, too. I don't know if this tip will help anyone on here, but I have found that sucking on sugar-free cough drops (menthol flavor) helps with my nausea. I hope it will help someone here as well.
Hippos little stretch at the beginning is the video was absolutely adorable
Jaquie, being unsure about a big decision as that is completely normal! These are alterations to your body, it is ok to take time to decide what is better for YOU^^ Take your time and decide with peace, information and heart!
Praying for peace and confidence with your decisions. Sending you love and prayers from Texas.
I’m praying for you Jaquie!!!🙏🏻🙏🏻🙏🏻
Hey Jaquie, just wanted you to know I'm with you in spirit, supporting you and cheering you on through all your battles. Also enjoying watching your good times. Love ya! Harlow and Judd too. 👍👊☝️🙏✌️🤞
thanks to your videos and strength I had the courage to tell my doctor that I was tired of not walking. I'm 24 and up until a month ago I couldn't walk unassisted and without numbing pain in my legs because of my hip problems. I have since started medical marijuana and I can walk again with only mild discomfort and no cane or wheelchair.
I’m glad they could get you in sooner this time. Hopefully you won’t get too awfully drained before the replacement. ❤️
Hope you are able to make a decision with some peace in it at the same time. Over the course of 2016 to 2017 I had constant intense day and night lower abdomen pain. As I had uterine fibroids and rare Turners Syndrome that makes it difficult to have children, the logical step was a hysterectomy. Every time I got prepared for the surgery I cried and felt rotten emotionally. A bunch of m.d.s and friends thought I was nuts for not doing it. I finally went and spoke to my Turner Syndrome specialist and she suggested to have a hysteroscopy to remove a new polyp (similar to what my obgyn offered) and a diagnostic laparoscopy to have the surgeon see what was happening without Uterus removal. When I woke up after my surgery in August my pain was 100 percent gone! I felt bruised but fantastic. Of course I had a few weeks recovery, but this far in my journey it was the best decision for myself. The best you can do, is what you are happy and comfortable with. In the end it is in gods hands and it will be ok. Sending love and good vibes. Kate
I'm happy it worked out for you! ♥
HannahOfferdahl Thanks Hannah! Sending you a hug.
You keep working at it. I'm dealing with a severe infection right now, so I watch your videos for inspiration. I'm considering doing a vlog as well.
Sending you lots of prayers & positive vibes!!! 💛💛💛
Prayers for you in making a decision that will be right and the you are comfortable with. God bless Jaquie.
So sorry you're going through the feeding tube kink again. At least it won't take too long to get it fixed this time so you hopefully won't lose weight. Take care hun and stay strong. Love ya both and Harlow too, of course.
Sending you all love and concern. You are brave and doing good by sharing your journey
Love you hun, no advice one way or the other from me, just praying God gives you peace one way or the other. We stand with you! ♡♡
i hope you know that i am thinking of you jacquie and that i know these are never easy decisions to make. Sometimes there's not a right decision or an easy decision sometimes there is just the one you make with qualified medical advice and your intution and you deal with the good and the difficult things that that decision has given you.
Praying for you and your family for having to deal with this again so soon. Praying that you find peace with which ever option works best for you.
You got this! Keep moving forward!
Hey Jaquie! I hope you can find clarity and peace about your decision. I believe with your support system, your surgeon consult, and your GI, that you will come to a decision! Good luck to you. Keep on keeping on! Thursday is coming!
You are in my thoughts and prayers♡ You are right, talking with the surgeon will help you decide what is best for you!♡ I have a seperate G and J tube...I don't regret the decision...I had a complication with healing and I had to have a second surgery to fix and replace the tubes...after my second surgery...the pathology report came back showing that my small intestine doesn't get enough blood flow...so there was a lot of worry if it was going to heal and if I could keep the tube...happily, it has healed and it works beautifully....I am thrilled to report!♡ I am here if you want to contact me and ask specific questions. You are amazing and I really appreciate your videos ♡ Big Hugs ♡
It’s hard when you’re on a bit of a time crunch, but I hope that you’re able to find peace in whatever route you decide to take. Hang in there!
It's hard for us all to not get involved at this point. You all are like family to all of us on here. In our thoughts daily! Even my mom asks how you are today! We all worry about you and are just trying to toss ideas to you. You never know when there may be an ah-ha moment that strikes that may be that "thing" you were waiting for to click and give you the answer! Believe me.. I'm as stubborn as they come when it comes to my spina bifida and other medical stuff I deal with. But it's still nice to know, ppl are trying to help even when they have no clue! 😂😂 then i realize.. it's just out of love. Thanks for letting us peek into your lives! No matter what, you have to feel good about what you decide. You got this!
I hope everything works out and you do what is best for you
Jaquie God will Guide you! Im praying for you all the way in Canada and always keep on moving forward
Also in my last comment I forgot to tell you, you and your doctors know the right decision to make and I hope the decisions you make are the best and will hopefully help you get better and help you get the most of life that everyone deserves ❤️
Jaquie it’s your decision I’m glad your weighing out the pros and cons with your situation I hope you the best with your decision and hope you feel better soon😄
Sounds like from the list of pros and cons you listed you pretty much decided to go ahead with the splitting of the tubes! Go for it!!
Yay your procedure is only a couple days away unlike last time where it was a week away. Don't forget to ask to keep your old gj button! Prayers are being prayed for your confusiong tube situation!❤❤
Many gentle hugs and prayers for you sweetie!
Sending prayers. God will direct you in the right direction. You will know what is right for you. ❤️
Prayers to you 🙏🏼
Hang in there girl! Hopefully just a few more days!