8,915 Posts

46min tubietude
Normal Tubietude
tubietude Only a vitamix owner will understand. Shout out to tubies on a blended diet! LOL #vitamix #tubietude #feedingtube #gtube #feedingtubeawareness #blendeddiet 46min

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50min tubietude
Normal Tubietude
thatdefyinggravityspoonie Got myself some new #tubecovers. Aren't they pretty???
A few months ago I took this account down because I got super sick and needed to focus on getting better (obviously, "better" is relative). It's halfway resolved now, resulting in a feeding tube, worse migraines, and crazy nausea.
Once I gain back some followers I'll share my story, but basically: I've been sick since 13 with POTS, migraines, chronic nausea, and another thing I'll share later on.
#dysautonomia #pots #posturalorthostatictachycardiasyndrome #orthostatichypotension #hypotension #tachycardia #chonic #migraines #nausea #butyoudontlooksick #invisibleillness #invisibleillnessawareness #gtube #feeding tube #hope #spoonie
1h

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Normal Emily Dent
emily_dent1 Lately Elsa doesn't want to eat when I try to feed her. So today I decided to let her feed herself. This will probably turn into a huge mess but don't know what else to do. #lifeafternicu #gtube #nicubaby #iamabiggirl #allbymyself 2h

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mahyers Another awesome video from thw other day!:) hello world!
#waving #hiworld #awesome #cutie #mybaby #downsbaby #downsyndrome #gtube #gtubebaby
5h

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katielawver It's crazy to think about all this little guy has been through already in his short life, and if you saw him out and about you wouldn't know he was anything but a healthy, happy baby #babyivan #ivanbump #teamivan #ivanstrong #kidneydisease #kidneyfailure #renalfailure #gtube 6h

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arinaj89 For the first time on a very long time.... the sun awaits... where is that tanner at!?!? #puertorico #playa #sol #spoonie #ontheloose #fuckgp #imgonnaeat #gastroparesis #gpfighter #tubie #gtube #jtube 6h

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Normal Malcolm Prang Huffman
miraculousmalcolm Malcolm wanted to try and sit up during his morning feed. Good core exercise! #cutebaby #gtube #hypotonia #hie #hypoxicischemicencephalopathy #hopeforhie #physicaltherapy 7h

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caligatormkz @kns31 You're dippin dots post & conversation convinced me to try some frozen yogurt today! I have strategically taken all of my nausea meds staggered the last 3 hours to see if that helps to keep it down, lol! This has always been my favorite place to go. Todays flavor is vanilla and mai tai sorbet. Here we go!! #gastroparesis #gpwarrior #gtube #jtube #piccline #nausea #chronicnausea #chronicvomiting #hope #motivation #cantsayididnttry #fingerscrossed #prettyplease #froyo #goldenspoon 23h
  •   kns31 Ooo, that looks good! Where did you get it? How did it go? 21h
  •   caligatormkz @kns31 There are a billion frozen yogurt shops here. The name of this one is Golden Spoon. I had about 5-6 bites, which was divine!! My stomach was okay for about 2 hours, then I was sick & ended up draining the rest from my Gtube. What an ignorant stomach, lol. But it tasted so good, that I'd be okay trying a few bites each day! 6h
  •   kns31 Nice! I don't suppose you would mail me some... 2h

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Perpetua Carrie-lou Crafts

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prslyyy You know you're a mom of a medically complex child when.. We leave on Monday for a three and a half day vacation to #UniversalStudios in #Orlando #Florida. Grandma is staying home with Haley and I'm literally freaking out about leaving her. Between her #Omphalocele / #gtube dressing change and her #trach I just keep thinking about Murphey's Law, anything that can go wrong, will go wrong. I've planned out ten days worth of dressing changes in separate baggies with all needed supplies in each one as well as pre-cut her #tracheotomy care supplies and made extra emergency reach change and g-tube button change bags. I restocked all of her supply baskets and even made a back-up bin of needed supplies! Of course my mom is more than capable of taking care of her but I truly am scared out of my mind! This will be the very first time Jeff and I ever leave her together and we haven't had nurses here since Haley first came home (and we never will again..) Cross your fingers and pray that all goes well and that we'll have nothing to worry about!! (plus, I'll probable #facetime every half hour just to check in) 1d
  •   keiang Wow. You are on the ball!!! 1d
  •   prslyyy @sophiaroses_mom yes! Everything just in case! @hintz1693 @keiang thank you ladies! I think my fears are driving me to be so organized lol 1d
  •   annabrunet Wow! She will be very well prepared :) enjoy your vacation! 1d
  •   prslyyy @annabrunet i sure hope so! Thank you! (: 24h
  •   danesa_dominic Bad experience with nurses? I've been lucky enough to have found nurses that became great long lasting friends. Not always the case though, some nurses get lazy with home care! I was always particular with suctioning. Have fun on your vacation, you deserve it! 3h
  •   prslyyy @danesa_dominic thank you! we had a TERRIBLE home nurse experience.. We had three when we came home with Haley. They'd get to our house at 8:00am, right when we'd wake up, one would sit in the car for an hour and try to clock that on her time sheet. One would plan vacations and her schooling while here. They talked about other patients by name in front of us. They took personal calls constantly and would talk/laugh at full volume while Haley would nap. One tried to suction Haley and when she kept crying I noticed she left the suction catheter down her trach and her lips were blue, one fell asleep on our couch. They would try to tell us how long they'd work that day and when they'd come and leave. I had to teach them how to set up the vent tubing because they didn't know how to do it. One told me it was time for me to let them do Haley's baths and let go a little. One forgot to give me paperwork in time and ended up losing nursing and calls me saying 'we'll be there at 7am and these days till 6pm and 6am on these days till 6pm and we're letting go of the weekend nurse'. From the moment we took them on they tried to run my house. They even tried to get me to sign off on ridiculous hours that they weren't even here, or even while they were on vacation, for them to get paid. After she tried to tell me when and how long they'd be here I said hell no and let them go right then. And they literally did nothing here. I did Haley's bath and dressing changes, took care of her broviac Line and mixed her TPN and set that up too. They literally came here and just sat on our couch for hours on end and got paid. 🏼🏼🏼🏼🏼🏼🏼🏼 2h
  •   danesa_dominic @prslyyy omg that is horrible! Awe that's sad because you could use the help if you trusted them and didn't suck! What company was this? 1h
  •   prslyyy @danesa_dominic they were independent, unfortunately. 51min

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certified_sco Good Friday Everyone, two opened heart surgeries in his first yr of life. #teamchace turned 19mo and he's out here showing it for the young ladies. ? 05 || 29 || 15 1d

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an_endless_winter #surgery#milestone#sofar#ea#tef#repair#pain#gp#feedingtubes#painfree#scars#blood#tubes#gtube#jtube#tubefeeds

Been a year since I got my g/j tubes out..this July will be two years since surgery.
1d

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Ludwig Sir Nic Garigen The First

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