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    Post

    Thank you very much for this opportunity given to me by you to express myself. I am really honored in getting to know you. Let me tell you a little ab

    #Gtube #h #anxiety

    Post

    Somewhere in Between

    I started something I hope will grow into amazing. Visit somewhereinbetweenco.com!!! This is a project I am passionate about and I want to grow into something wonderful!!! Parents of special needs and medically complex kids are stuck. They're stuck between lawmakers and insurance companies and medical providers;they're stuck between work/life balance. Somewhere In Between is my blog where I share my journey with these in between spaces and I hope to grow a community that is empowered to make change in the world, even if it's small #MedicallyComplexChild #ChildrenWithSpecialNeeds #InclusionAndSpecialNeeds
    #worklifebalance
    #Gtube

    Post

    Hospital Life, Anyone else doing time for your condions?

    I am currently in the Hospital. Very lonely and bored! Anyone else? Looking for connections with people with similar conditions. Hospital or not.

    #Gastroparesis #EhlersDanlosSyndrome #Dysautonomia #TPN #Gtube #HospitalLife #TransverseMyelitis

    Post
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    Nursing and in home care during COVID-19

    Hi, I’m new here. I’m the full time caregiver for my five year old daughter who has spastic quadriplegic cerebral palsy. I live with her, my husband who works from home and our oldest daughter who is 8 and now is homeschooled due to Covid-19.
    We have been very strictly quarantined since March 9. When my daughter gets even a cold she needs hospital care so we’ve been home and haven’t interacted in person with people this whole time. Up until about 7 weeks ago one of us would grocery shop, but now we use curbside pickup.
    We turned down the opportunity to have in home nursing care in July/august to be safe. I regretted that decision as the school year started and I attempted to homeschool both of my children ages 8 & 6.
    We have the opportunity again and I still can’t give a solid yes even with an exposure assessment, the promise of n95 masks etc etc
    I’m scared but I also desperately need help and we will be locked down for a very long time to come. Is it time for me to accept the help or should I keep us locked down?
    I want to hear if others have let caregivers into their home, your experiences with that and just generally any opinions and reasoning on what you would do in my position. There are a lot more details to share for context but this post is already so long.

    Thank you for sharing your stories with me here.
    #CerebralPalsy #HypoxicIschemicEncephalopathy #Gtube #MedicallyFragile #MedicallyComplex #MedicallyComplexChild #SpecialNeedsParent #ParentsOfChildrenWithSpecialNeeds #GettingHelp #HIE

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    Struggling with #abdominalpain

    So tired of living in such pain all the time, i know my mighty friends understand! Spent the day at the ER because my G tube literally fell out in the midst of a bout of violent vomiting... I have a g tube for venting my stomach to decrease the vomiting but stopped working Friday night, low and behold, because it was no longer in proper place! Well, on the bright side at least he got it back in but not before sending my pain through the roof. He had to apply a ton of pressure and even with decreasing size felt like he was trying to put a blunt screw through to my spine via my already chronically painful abdomen. Not to mention how sore i am from all the vomiting that's been going on for days... Lidocaine did little to help and apparently the fascia had already started closing so he was literally stuffing the blunt tube in, tearing through the fascia. Home now but dealing with the aftermath and know I'm not getting any sleep tonight... Would love some distraction please? Or advice on what my fellow spoonies do to deal with extreme painful nights, especially abdominal pain? TIA #Upallnight #ChronicPain #abdominalpain #FeedingTube #Gtube #Gastroparesis #nausea #Vomiting #Dysautonomia #Dysautonomiastruggles #HypermobileTypeEDS #ChronicIllness #NeverGiveUp

    Question
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    Does anyone know what these are for?

    I was wondering if anyone knew what they plastic “buttons” were for next to my GJ Tube? My doctor never told me and I don’t see him for a few weeks so if anyone could help that would be great. Thank you!
    #GJtube #GIDisorder #FeedingTube #Gtube #Jtube #Stomach #stomachpain #ChronicIllness #ChronicPain #EnteralFeedings #Surgery #GI #help

    Post

    Hi Guys, I'm on youtube!

    If you guys would like to check it out heres the link 💜 youtu.be/kIA8mVz6Qw0 #TPN #TubeFeeding #Gtube #ShortBowelSyndrome #Gastroparesis

    Question

    Anyone have J tube feeds back up into your stomach? What do you do about it?

    I've had a J tube for going on 7 years and have had intermittent trouble in the past with tube feed backing up into my stomach and then sits there until I vomit. After sepsis in November and an ischemic bowel injury has become a major issue. Constant pain, vomiting, dry heaving all feeding into each other and i was getting practically no calories and was only staying hydrated because of my iv fluids. Well, we tried and tried but nothing was significantly improving so in February started TPN, which is almost a death sentence for me because of my history with sepsis... At that point though there were tough conversations about dying fast from sepsis or a slow death from malnutrition and dehydration... So did end up starting TPN but my GI Dr also placed a straight (separate) G tube so that i could vent instead of vomiting all the time. Making a world of difference as it broke the cycle of vomiting and dry heaves, while not gone, much less frequent. So tried to reintroduce tube feed and was supposed to go up on tube feeds and slowly come down off TPN. Well... Sepsis... Again... After that cleared plan was to forge ahead as i had finally got to a whole 10 mls/hr. Was home only 10 days before sepsis struck AGAIN. (Same bacteria so think the antibiotics didn't clear the previous infection completely.) Came with a vengeance and landed me in ICU again on pressors AGAIN... As if that wasn't enough developed flash pneumonia and went from a little dry cough to intubated in under 40 hours. Really brought me to the brink this time and ICU DR said if I continue with a central line it will kill me. Thus began the all out battle to get my gut to accept tube feeds. Was able to get tube feeds up to around 1,000 calories but due to covid was rushed out of the hospital before seeing if i could stay hydrated via j tube, as they pulled the central line. That has been the biggest piece of my struggle right now. Within 2 weeks started doing peripheral IVs for hydration as tube feed was consistently backing up and leaving me with way more output then intake. Also driving that was lack of urine and concern i don't end up with kidney damage. Well, am getting hydration via sub q now (long story) but to get adequate total fluid intake had to back down the tube feeds so now only getting around 700 calories a day, obviously not sufficient long term. Driving factor still being that when i increase the rate it flows backward. Last 2ish weeks been spiking fevers and Dr thinks it's a gut infection so doing rosefen shots to hopefully clear that up and maybe improve the inflammation. Hoping maybe once that's healed I'll tolerate the feeds better. Sorry this is so long but wanted to share some background to the problem. Does anyone have experience with this type of malfunction? What did you do about it?
    If you made it through all that, thanks for reading! Look forward to hearing back! Be Well! #Gastroparesis #TubeFeeding #Dysautonomia #Gtube #abdominalpain #Sepsis

    Post

    #postpartum is rough in general; today was a struggle


    #MentalHealth
    #Gtube

    #PostpartumDepression

    I just got the 3 year old to bed and hubby put the 8 month old to bed. as I pump, I am so overwhelmed and emotionally exhausted I just want to crawl under a rock. the 3 year old cried for about 30 minutes because he lost his story time for being defiant and not following directions. I feel like things between my husband and I are tense. We are probably both tired...I know I am. when I am tired, I get so emotionally overwhelmed it's like I cant but coherent thoughts together and when my toddler is repeating himself over and over and over I just want to explode. most nights, I'd rather be cuddling with my 8 month old. The toddler wont let Dad do anything most nights. then after both kids go to bed, his band wants attention and I just dont have anything left to give. I spend 100% of my day taking care of others (my job entails a lot of complex problem solving and helping people through injury). I just want to come home to quiet and spend a nice evening meditating.
    I'm not sure what I'm looking for in this post... nothing I think. I needed a few minutes to dump all these thoughts out of my head. thanks for reading my rambling.

    Post
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    Medical Cares Will Not Stop Us From Going Out in Public

    When we first came home with AJ, I was really self conscious about doing his medical cares in public.

    I would take his stroller outside of the restaurant to suction him. I would schedule our trips into town and stores to be in between his meals and meds so that I wouldn’t have to do them in public.

    It wasn’t because I didn’t know what I was doing, it was because I was afraid of offending someone else. It was because I had read stories from other parents who had been confronted by strangers, or were even asked to leave a restaurant because caring for their kid was “gross”.

    I really wish I could go back to the me who thought that way and shake some sense into her.

    First - I was setting a ridiculous example for AJ, showing him that he should essentially be embarrassed by his medical cares. I don’t want AJ to grow up thinking that he should try to hide himself from the rest of the world for any reason - medical or not.

    AJ has just as much right to experience the world as anyone else. I would actually argue that he has fought so hard for his life that he deserves those experiences more than most. His medical needs should not hinder him from getting the most out of his life - even if that is just a trip to Target for groceries. (Well, except during cold/flu/rsv season when we go into lockdown, but that’s a whole different story!)

    Second - If AJ needs to be suctioned, then he needs to be suctioned. If it bothers someone at a table in a restaurant, or in the waiting area at sports clips, then oh well. And the same can be said of him getting his meds and food.

    Maybe it sounds harsh, but those meds and cares are what keep him alive. If it ruins someone else’s meal to hear a suction machine then oh well. That person will live just fine without finishing their loaded mashed potatoes. AJ, on the other hand, might not live without his cares.

    Third - People in general really aren’t mean. They may look quizzically at you, or do a double take. They may turn around to see what the noise is. They may even ask a question or two. But we haven’t had one person say anything negative to us at all while we have been out and about.

    In fact, we’ve had more of the opposite. People will tell us they think it’s amazing that we are able to get out and see the world with AJ. Or they will tell us how cute or sweet he is. We’ve even had strangers anonymously pay our bill at restaurants.

    Ultimately, if someone has something negative to say or are offended by the medical cares he needs to have done while we are out and about, the real problem is that they’re missing out on seeing the truly amazing kid that’s right there in front of them.

    —-

    #DownSyndrome #trisomy21 #t21fam #TheLuckyFew #TrachMom #Trach #Tracheostomy #Gtube #blendeddiet #blenderizeddiet #medicalmama #SpecialNeedsParent #Awareness #Acceptance #targetrun