#njtube

[pale-moonyart]

A Redraw For Feeding Tube Awareness Week. _______________________________ Thank You For Liking And Following ♥️ _______________________________ #feedingtube #feedingtubeawareness #feedingtubeawarenessweek #ngtube #njtube #gtube #gjtube #jtube #pegtube #tubie #autisticartist #irishartist #disabledartist #art #draw #drawing #markerart #markerdrawing #copicmarkers #ohuhumarkers #alcoholmarkers #sketchbook #sketchbookdrawing #sketchbookart #sketchbookpage #artist #artwork #tubielife #copicart #markers https://www.instagram.com/p/CodfjXVDLNm/?igshid=NGJjMDIxMWI=

[swimmiey]

A little over a week ago my NJ started to leak bile and stomach acid. Also everytime I ate or drank something it leaked out and I started to threw up formula, so I knew it had migrated from my jejunum to my stomach and needed to be replaced. It happened on Saturday night so we decided to hold my feeds for a day and called my nephrologist on Monday. They had an opening on Tuesday, so I wasn’t to long without my feeds. It needed to be replaced on the endoscopy ward with a gastroscopy. I was given versed, but was still wide awake and noticed everything that happened during the endoscopy. They tried placing it through my nose instead of my mouth like last time, but the scoop was to big so it did hurt like hell.. but I’m glad they were able to place it through my nose. Hopefully this tube stays in place for a while, because I’m really disliking the placements. My blood pressure was really low during the procedure and after (70/35) the alarm went off constantly, so they almost made me stay the night.. But luckily it came up just enough to be allowed to go home. -------------------------------------- #njtube #ifeellikegivingup #feedingtube #feedingtubeproblems #sickandtiredofbeingsickandtired #spoonie #spoonieproblems #totiredtofunction #chronichope #chronicheadache #chronicillness #chronicpain #chronicfatigue #electrolyteimbalance #invisibleillness #intracranialhypertension #sondevoeding #fanconisyndrome #butyoudontlooksick #headachefromhell #versed #hospitallife #hypotension #endoscopy #gastroscopy #endoscopie #gastroscopie #ineedacure #chronischziek #kidneydisease (bij Isala)

[tubietips]

WELCOME: FEEDING TUBE TIPS BLOG

Welcome, professionals, carers, fellow tubies, prospective tubies and non-tubies alike!

My blog, "Tubie Tips" aims to empower you with information so that:

- If you're having tube troubles they may be resolved

- If you are in medical work or caring you can prevent so many tears and stress both for you and your patient(s)

- If you're awaiting a tube you're armed with tricks up your sleeve to prevent and address any issues

- Everybody else has the opportunity to understand what tubies are dealing with and see that it's not the end of the world if it ever happens to you, and it will to some of you.

It is informed by my personal experience as well as some research and includes the good (yes there is good!), the bad and the ugly. Ok sorry for the corny over-used movie-title quote! ;)

My experience is predominantly with nasojejunal tubes so most posts come from that perspective but I will talk about all types.

Feel free to let me know if there are any topics or questions you'd like me to cover.

There will be some fun tips too and all positive comments are welcome :)

Enjoy!

Lots of Love,

Sorcha

[squeakykirby]

He says "little do you know I just puked all over mommy" #childrenshospital #happybaby #josephdaltonkirby #boymom #babyjdk #babyjoey #babydalton #babybear #tubie #tubiebaby #njtube #babiesofinstagram #babiesoffacebook

[positively-rachel]

Embrace It

Illness is not easy in any way, or for anyone. When your life is suddenly pulled out from under with little to no warning, and by something that no one, yourself included, has ever heard of nor can anyone begin to understand, boy does life change.

I got sick in high school, and thanks to some ignorant doctors, my parents were pretty sure I was going to be better in no time. I was a young female…

[chronicallydivine]

Wow, thank you for sharing 💖 Good to hear about your #gastroparesis remission too 💚✨ #Repost @msjaynharleyquinn ・・・ I love my new pins from @chronicallydivine ! They're gorgeous and arrived faster than expected. (I'll have to give my gastroparesis warrior one to someone else since they renounced my eight year diagnosis after I placed the order lol.) Oh well. They are perfect 💚 #Spoonie #Spooniecorn #Gastroparesis #Tubie #NasoJejunalTube #NJTube #ChronicIllnessWarrior #ChronicallyDivine #EtsyShopLove

[kiss-my-kitty]

My 32nd birthday will hopefully go down in history as the worst birthday I have ever had. Highlights of that day? Liquid Oxycodone and licking a cupcake just to get the flavor of the icing. 🍰 My 33rd birthday has been quiet and free of feeding tubes and other significant medical problems.l #NJtube #feedingtube #Timehop

[spoonielivingapp]

Thank you for Sharing 💜Sending Spoons ✨🥄 Repost: @pigeons_flight_for_lifeThe @spoonielivingapp has an update with loads more stickers! So I have my central line and have started TPN 💪🏼💉 can't wait to feel more energised again ❤#gastoparesis #ehlersdanlossyndrome #gastrointestinaldysmotility #TPN #seizuredisorder #asthma #foodavoidance #autism #adhd #anxiety #dysphagia #arfid #lqts #mentalhealth #food #NJtube #NGtube #tubie #spoonie #flareup #sick #allergy #anaphylaxis #nutallergy #PEG #PEGJ #jtube #surgery #spoonielivingapp #spoonielivin

[thecaregiverspace]

😬Say Teeese😬 #evelyntheresa #littleandbrave #tubie #tubiebaby #jtube #njtube #tpn #totalparentalnutrition #centralline #hickmanline #gtube #cipo #dysmotility #flna #pvnh #ketotichypoglycemia #facesofcare #chronicintestinalpseudoobstruction #hypoglycemia #myheartkid #medicallycomplex #hospitallife #rare #raredisease #livingwithraredisease #careaboutrare #mightyrare ( #📷 @3_little_misses ) https://ift.tt/2Od659e

[swimmiey]

I’ve had an amazing swim clinic tonight from Olympic swimmers @idekker and @saskia_de_jonge. And even though I’m pretty tired now, I’ve had a blast. It was so nice to be able to swim again. I was so happy I was able to do this even though I was pretty tired all day, I really needed some positive energy. Doing thing like this is really helping me to get through the bad days. Big thanks to Inge and Saskia for making my day. 🏊‍♀️ #swimmerforlife #swimclinic #iloveswimming #missswimmingsomuch #chronicillness #invisibleillness #njtube #chronichope #headachefromhell #ineedanap #itneverstops #intracranialhypertension #fanconisyndrome #electrolyteimbalance #kidneydisease #kidneyproblems #kidneyfailure #childhoodcancersurvivor #nursingstudent #butyoudontlooksick #myheadhurts #positiveenergy #totiredtofunction #spoonielife #spoonie #spooniestrong #spoonielife (bij Optisport Dronten zwembad Overboord)

[tubietips]

Help - my NG/ hurts! Is that normal??

Tube pain is no fun, to say the least! Sometimes I've even found it unbearable but don't fear; it doesn't always happen and if it does, there are a number of things you can do.

Here will be a series on pain of different types in different places and what troubleshooting or even prevention can be done. If you are waiting to get a first tube in, please don't panic! It might not hurt at all and for the most part, they're actually ok and my more recent ones DON'T HURT :-D I barely even notice they're there - and I'm someone with pre-existing chronic pain near the site!

My aim is that people reading this (professionals - that includes you too!) will be able to prevent problems I've experienced and solved myself. I found not much information available when I had these so I'm sharing with the intention of helping others.

I will talk about:

- Tube discomfort

- Insertion pain

- Nose pain

- Face pain

- Throat pain

- Neck pain

- Jaw pain

- Tummy troubles

And what you can do or what I've used to prevent or relieve these. If you've tried everything including everything I'll cover, don't lose heart: there may be many more solutions I haven't discovered, after all, I'm ONE person. Feel free to get in touch with any more remedies and solutions you've discovered :-)

Of course, I hope you don't experience any pain or problems!

With Love,

Sorcha

[squeakykirby]

This tubie baby thinks you're too funny! #tubiebaby #childrenshospital #piccline #picc #njtube #babiesofinstagram #josephdaltonkirby #babyjoey #babydalton #babyjdk #babybear

[swimmiey]

Haven't done a proper update in a while. About a month ago I saw my neurosurgeon, he said there's nothing more he can do anymore. I just have to learn and live with it. Still so sad and angry about it, I really had my hopes up for this neurosurgeon. And A little over 2 weeks ago I've had an outpatient appointment with my nephrologist and was admitted after because my levels weren't what they needed to be. My kidney function had dropped, my phosphate and potassium levels were way to low so I needed telemetry to make sure I wouldn't get any arrhythmias. At first he wanted to try to bring my levels up with giving double dose through my NG tube, but after 4 days me levels only got lower so they decided to start an iv after all. It was in my ankle/foot because they couldn't get a vein anywhere else. A week later my doctor wanted to do an gastric emptying study and upper endoscopy to see if there was a reason for my constant nausea and vomiting, even though I still think it's from the intracranial hypertension, neurosurgeon stated it can't be so they want to dive deeper into it. Didn't have the GES yet, but during the endoscopy they changed my NG for an NJ tube, hoping that will help with the vomiting. Was discharged after another 10 days admission. Have to do blood work again in 2 days, hoping my levels haven't dropped any further, since they already were dropping before I was discharged, but it was still in the safe range so I was allowed to go home. #njtube #tubefeeds #electrolyteimbalance #invisibleillness #chronicillness #incurabledisease #intracranialhypertension #myheadhurts #kidneydisease #kidneyproblems #spoonielife #spoonieproblems #hospitallife #endoscopy #endthestigma #gastricemptyingstudy #hypokalemia #hypophosphatemia #telemetry #ivpotassium #ivphosphate #totiredtofunction #sickandtiredofbeingsickandtired #butyoudontlooksick #chronicpain #chronicfatigue #chronichope #miracleshappen #believeinhope #nephrologyward (bij Isala)

[kittyalice95]

20/12/16 Not Well #poorly #sick #chronicallyawesome #chronicillness #spooniewarrior #spoonie #myalgicencephalomyelitis #ehlersdanlossyndrome #EDS #ME #njtube #nasojejunaltube #tubies #tubie #tubielife