#feedingtube

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Alright guys, fingers crossed THIS is the time! 🤞 I had another shunt revision surgery today (my 8th in the last couple months). I now hold the record for the most complex shunt, complicated placement, and most components that they have ever placed. Not a contest that I set out to win... I would have settled for a participation ribbon. But we are hoping that the next few days will show that I am well enough to return home after a month in the hospital. . . . But anyway, I just really wanted to give a huge shoutout to all of the vloggers, bloggers, and advocates out there that are pushing through their own health complexities to give a voice to their communities. I can tell you first hand just how much of a sacrifice that is. Special props to daily vloggers! You are a rare breed! I can’t even imagine 💜 Guys these people deserve a round of applause 👏 It is NOT EASY!
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Henley had her follow up appointment this morning. Kraig and I were able to ask lots of questions and it’s been decided that Henley will have open heart surgery sometime soon, probably Oct. or Nov. depending on the surgeons schedule. Hopefully this one surgery will be all she needs, but there is a chance she’ll need more. After the surgery, Henley will be in the hospital for 1-2 weeks and will be recovering at home for another 5-7 weeks. We really appreciate how thoughtful and generous you all have been. Kraig and I are so fortunate in so many ways. I’ve been able to take a leave of absence and stay home with our baby girl and we have a very strong support system with our amazing family and wonderful friends. Plus, Henley is the light of our lives. We just love her so much. . 💜💜💜 . . . . . . #henleylorenbeebe #babygirlbeebe #heartcondition #midmuscularvsd #phoenixchildrenshospital #hearthole #chd #congenitialheartdefect #henleysheart #henleylorensheart #readmyblog #lessthanonepercent #heartsurgery #ngtube #feedingtube #giproblems #1in100 #heartwarrior #hearthero #bravelittlewarrior #momlife #newmom #heartstrong #momstrong #invisibledisease #invisiblewarrior #heartcatheterization #openheartsurgery
Dear feeding tube, I never wanted you. At first, I was convinced you were going to ruin my life. That first week we were together was absolute hell, and I thought I was right. You were a mistake, and I hated you. Then I started to get to know you. Slowly, you began to change my mind. Maybe this arrangement wasn’t so horrible after all. I learned your quirks, I cared for you every day, and you quickly integrated yourself into my routine and my life. I realized that you were helping me too. Feeding my body the nutrition it so desperately needed and that my stomach so traitorously rejected. I began to feel better, stronger - and I knew it was because of you. The day you became a button, my love for you grew. You were no longer uncomfortable, unwieldy, and unfashionable, and you became more a part of me than ever before. You are, dare I say, cute. Advocating for you was worth it. Today, you’re so normal and natural and part of me that I can hardly imagine my stomach without a tube through it. You've given me my life back and helped me live it. If a feeding tube is the price of life, I’ll gladly pay it. You changed everything I thought I knew about feeding tubes and the people who have them. I know If I could go back, there is little I would change. I still don’t want you, but I’m so, so thankful for you. Happy One Year Tubeiversary, little friend.
Hi everyone:) So September is chronic pain awareness month & I thought I should post about it since I deal with it everyday. My chronic pain started when I was diagnosed with Psoriatic Arthritis at the age of 6. My joints would always hurt and then I was diagnosed with Crohn’s disease at age 11 and I really found out what chronic pain was like. • • I’m 20 now and my chronic pain has only gotten worse because of my joint pain, Gastroparesis, Intestinal failure, Crohns and my stomach ulcers. • • I know that there are soooo many people who suffer with chronic pain and I hope that each an every one of you reading this can get it under control ❤️. Don’t ever let anyone make you feel like your pain doesn’t matter, because it most definitely does! & never feel ashamed to talk about it and to be on medicine for it! • • Thank goodness for my pain management doctors at Childrens. They really listen to me and understand how much pain I am in on the daily. One of my current problems is dealing with the constant joint pain, so I’m going to talk about IV Tylenol at home. I did it in the hospital and it helped a lot of my neck pain and then headache that comes with it. Fingers crossed they let me do it!! • • • • • •#chronicpainawareness #chronicpain #hospital #chronicillness #pain #gastroparesis #broviac #feedingtube #gtube #crohnsdisease #chronicpainawarenessmonth #psoriaticarthritis #arthritis #notfun #sick #intestines
I’ve said it before and I’ll say it again: I don’t think that there’s a more comforting place for a baby or toddler on the spectrum than the sling. Two years old and still taking sling naps ✨thanks @wildbird #mywildbirdcotinga 📸: @mrsjoujoute
For some people having a feeding tube would mean it’s the end of their lives; for me it’s just the beginning
I am incredibly honored and excited to share this blog post from @canuckplace Children's Hospice! I had the privilege of speaking with the team about THD and our clothing recently! Featured in this article are two of our Reps: Maddison and Lochlan and our client who sparked the conversation: Lumina. Thank you so much for all of your support Canuck Place! 💙🎉😍 Read The Post: https://www.canuckplace.org/taylorhart-designs-creating-inclusivity-one-design-at-a-time/
Leah is still destating and struggling. They are moving her to a #CPAP now. Please keep the prayers coming. Because if this doesn't work she will be intubated. We really would like to avoid this. We need your prayers. <3 #pleasepray #butGod #downsyndrome #rhinovirus #picu #icu #hospitallife #babiesofig #redhair #heartbaby #heartwarrior #feedingtube #oxygen #ngtube #infantilespasms #epilepsy
Lots of learning on Day 2 of the Pediatric Intestinal Failure and Rehabilitation Symposium here in #Pittsburgh ! Some brilliant clinicians from all over the world discussing the issues facing this unique population.⠀ 🔬⠀ #pedsintestine #intestinalfailure#tpn #dysmotility #transplant ⠀ 📚⠀ #qualityoflife #healthcare ⠀⠀⠀ #vascularaccess #gusgear #isavethatline #CVAD #totalparenteralnutrition #feedingtube #tubie #ostomy #dysautonomia #ileostomy #colostomy #centrallines #gtube #chronicillness #shortgutsowhat #shortgutsyndrome #shortgut #broviac #hickman #sbs #gastroschisis #hirschsprungsdisease
Happy Friyay, StomaStoma fans!! Owen is practicing his best Trach or Treat face as we count down the weeks till Halloween! #🕸 #🕷 #🎃 ​​• ​​• ​​• ​​• #stomastoma #trachlife #trach #tracheostomy #gtube #tubie #fashion #kidsfashion #hospital #stoma #trachbaby #specialneeds #feedingtube #makingabnormalnormal #community #trachcommunity #togetherstrong #respiratory #respiratorytherapist #speech #speechtherapy #trachortreat #halloween
In the last three days I’ve been diagnosed with Gastroperasis and celiacs and had an NJ tube put down. We were trying to avoid the tube but my body needed it so badly. I’ve not a proper nutrition in a very long time and keeping liquids down is a struggle. Even though we didn’t want a feeding tube I had to listen to my body and this is what my body needs right now. • • • • #gastroperesis #chronicpainwarrior #chronicillnesswarrior #hypermoble #eds #ehlersdanlossyndrome #hypermobility #hypermobleehlersdanlossyndrome #spoonie #njtube #feedingtube #chronicillness #zebra #medicalzebra #spooniestrong
Hey guys! We are finally open again after catching up or orders and a little vacation time ☺️ Feel free to message me with any questions and placing orders #feedingtube #tubie #gtube #pads #open
We got Sawyer’s feeding tube replaced this morning. He is a rockstar! Check out the x-ray of his spine and stomach. He is one twisted dude. #sawyerjames #debarsysyndrome #livinginthemidstofdying #hero #thejoyofimperphection #feedingtube
Every morning I wake up and think "Do I have time for quiet time?" And in the past, I would just skim over and start chores before Aera wakes up. But recently, I've won that internal battle and decided to sit down for however long I can and spend time in the Word. The Lord has been so sweet in his gentle teachings this week and I've been encouraged and humbled through my morning quiet times. It makes me more patient with Aera, more disciplined throughout the day, and more thoughtful towards Jared. With all the benefits of spending time with my creator, why is it always such a temptation to skip over that sweet morning time? It's not only better for my own heart, but for my whole family. . . . . . . . #ourlightwithin #simplychildren #magicofchildhood #honestlyparents #storytellingmama #thenarrativesociety #parenthood_moments #thecandidclass #theartofchildhood #our_everyday_moments #theheartcaptured #moments_of_mom #igmotherhood #lookslikefilm #theeverydayportrait #lovingtheordinarymoments #thegallerycollective #fortworthfamilyphotographer #fortworthnewbornphotographer #rarechromosome #specialneeds #specialneedsmom #theeverymom #feedingtube #tubie #rawmotherhood #teammotherly #myhonestmotherhood #ohheymama #uniteinmotherhood
It been a rough 24 hours. Days I can’t really make it off the couch are still tough on me mentally. It’s hard to watch my husband go to work day after day while I feel like a burden who’s not really contributing to society, just surviving. I have to continually remind myself my job right now is to take care of body and work with the cards I’ve been dealt. I cant dwell on the uncontrollable and must keep fighting, because that’s what’s most important. Luckily Maples always down to spend a day snuggling 🖤💜🍁 . . . . #chronicpancreatitis #chronicdisease #gastroparesis #feedingtube #gjtube #germanshepherd
A new born diaper and a gastro/jejunal feeding tube - the crazy thing is Maddison had already celebrated her first birthday when I snapped this picture. We were still in the hospital and I wanted to remember that at one year or age she was so small that she could wear newborn sized diapers. Her growth was extremely delayed, and her reflux caused her to lose so much weight. Feeding into the jejunal portion of her intestines would give her stomach a break and her tube feedings would stay in her body. This would allow her to absorb her nutrients and calories without refluxing then out. . J tube feeding gave Maddison her life back. It gave her the energy she needed to recover from her failure to thrive, to actually turn around and THRIVE! It has given her the time she needed to grow and strengthen the muscles in her abdomen. . She hasn’t completely grown out of her reflux, but we’ve made great progress. . I get asked a lot if Maddison has a nissen fundoplication (wrapping the top of the stomach around itself to keep contents inside) and no, she doesn’t. Because Maddison has always been able to protect her airway (which is surprising because of her immature swallow, and her severe reflux, she had never had pneumonia) her GI didn’t feel the need to do such an invasive surgery before giving he the chance to grow out of her reflux herself. She wasn’t at risk of aspirating so it was safe to wait it out. Although Maddison’s reflux isn’t completely gone, we’ve been able to see her manage it better with medication. She’s even at the point where she can orally eat 20ml of baby food and keep it in her stomach. . I’d love it if Maddison had the ability to eat all of her calories by mouth. But that isn’t how things are. We have the feeding tube, and I am incredibly thankful for it. It’s work yes, but it’s also convenient. I don’t worry about her taking her medications, I don’t worry about how much water she has had to drink, because I have full control of what goes through her tube. This feeding tube gave Maddison a second chance. Link to the blog post I wrote last year about switching to g/j tube feeding in my profile 🙌🏼
Our why 💛 • 📷: @sheisnotlost
"I'm grateful that my beautiful tubie has stopped vomiting since starting Nourish!" -- Julianna G.
Thanks for the kind words!
#fbf I vividly remember this day. After months of being miserable something finally clicked and Lizzy started to feel better. She was dancing and happy again. It’s hard to look back at how hard she had to fight. But that’s my spirited little girl! #spiritedgirl #fighterfromdayone #ligaseiv #postbmt #bmt #careaboutrare #feedingtube #diversityandinclusion
Soooo cheeky ❤ #cheeky #smile #feedingtube
This happened in the studio recently. Stoked it did. #revealed #feedingtube
Ill never forget The way you looked at me that made me feel so special. All the words you said to me that melted my heart, the way you put me before everything else. But also, I’ll never forget the way you tore me apart, the way you left me like it didn’t matter. I’m not sure which is worse, the fact that you destroyed me or the fact that I thought u never would. • • • • • • • #EDS #chronicpain #feedingtube #depression #NG #brave #zebrastrong #aesthetic #tumbler #chronicillnesse #invisibleillness #ehlersdanlossyndrome #pain #POTS #MCAS #spoonie #strong #glitter #pinkhair
❤ what's something your brave little one is going through in their medical battle right now? #medicalmom #medicalmama #medicalkids #medicallycomplex #medicallyfragile #specialmedicalneeds
✨I’ve never realized how weird belly buttons are until I sat down and edited this batch of photos✨ 🎈 But hey! The new Tubie Maker Feature is up and ready for your thoughts! 🎈 Have you ever used Bella Madalyn’s Tubie Pads? They are SUPER soft! 🎈 Head on over through the link in my bio and hear what Kaitlin, the creator of @bellamadalyn has to share and check out her shop! She even had a giveaway happening on her page right now! So get on that! ✨
Some people struggle with weight gain some people struggle with weight loss. What would you say when I told you it’s the same struggle. There are people who no matter what they do diets, or exercise can’t lose weight, or maybe can’t lose as much as they’d like. On the other hand there are the people who struggle to gain weight that no matter what they do or how much eating they do they can’t gain the weight. I personally am on the side that I can’t gain proper weight, no matter what I eat or change of diet or exercise I can’t put on the amount I want. I struggle to gain those 5lbs, just like someone might be struggling to lose those 5lbs. What I don’t like is when people say to me things like ‘you’re lucky you can eat what you want’ ‘you’re pretty cause you’re thin’ this isn’t all true. Number one I eat whatever I can to give me weight gain and nutrition, and sometimes I don’t even have an appetite for a few days or even a whole month when I’m sick! So my weight and health will plummet. Eating whatever I want is not all rainbows in sunshine. ‘I’m pretty cause I’m thin’ I can’t stress this enough that is not true. Some days I feel to thin I feel like a walking stick and it does not feel good! I don’t have many curves I’m pretty much flat everywhere so don’t say to me that I’m pretty cause I’m thin. The struggle from weight loss to weight gain is just the same. Don’t belittle me for being thin when we are fighting the same fight just opposite sides. #cysticfibrosisawareness #cfer #cfstrong #curecf #spoonie #cysticfibrosisfoundation #chronicillness #justbreathe #65roses #fundraising #cffoundation #lungfunction #lungs #hospital #transplant #lungtransplant #cysticfibrosiswarrior #port #iv #medication #cfirl #college #feedingtube #weightgain
Good news and bad news.... The good news is that the bad news isn’t cardiac related! The bad news is that Nora is headed into the OR within the next week or two. Unfortunately, her stoma (hole from the feeding tube) opened up again and has to be surgically closed. She’s fine, we’re fine... you know you’ve been through hell when your thankful that this time it’s “just her feeding tube” and nothing more. #littlemissnorarose
It’s not easy figuring medical things out. Coordinating with doctors and nurses and pharmacies is exhausting. But here I am, finally starting my IV antibiotics for this ridiculous infection. My J tube procedure is tomorrow and I am so hopeful it will help rid me of this infection once and for all. 💪🏻 . #ivantibiotics #homeivs #byebyeinfection #feedingtube #jtube #hopeful #thankful
this photo was taken exactly a year ago, and here i am now- 3 days before another life changing surgery. ⁉️how do you guys plow through all the pre-surgery angst⁉️ i haven’t been sleeping all week😩 • • • #chronicpainworrior #chronicpain #gastroparesis #gastroparesisawareness #feedingtube #feedingtubeawareness #gtube #gjtube #cecostomy #surgery #gisurgery #spoonie #invisibledisability #invisibledisease
Old scars and new scars.⚡️
Här kör vi gröna smoothies för hela slanten! Supermat i kombination med grönsaker och frukt och jag mår prima ballerina!! #iwillnotgiveup #feedingtube #peg #gröntärskönt #Fuckals #Beatals #greensmoothie #superfood #ballerina
We survived a three therapy-session-at-the-hospital marathon, classic New England “flannel or tank top, you decide” weather and two on-street parking spots instead of expensive AF hospital parking, so I consider that a win ✌🏻
On March 27, 2018 my beautiful daughter, Henley Loren was born. She was absolutely perfect except for the congenital heart defect she was born with. Even though this has made her life extremely difficult, and she’s faced more battles than most adults, it hasn’t stopped her from being a spunky, stubborn, adorable little girl with an amazing personality. I got my red AWARE necklace for her and every other baby born with CHD, which is less than 1% if newborns. The company @awarecauses has created a necklace for almost every cause you can think of and donates 10% of every necklace sold to a nonprofit organization to help with research, prevention, and awareness for that specific cause. In addition, they have also agreed to create a fundraiser for my daughter Henley! You can purchase any AWARE necklace you want and if you use the special promo code ⭐️ henleysheart ⭐️ you’ll get 10% off your necklace and $10 will be put into a fund for Henley. Check out their website now and get a necklace for the cause that means the most to you. . 💜💜💜 . . . . . . #henleylorenbeebe #babygirlbeebe #heartcondition #midmuscularvsd #phoenixchildrenshospital #hearthole #chd #congenitialheartdefect #henleysheart #henleylorensheart #readmyblog #lessthanonepercent #heartsurgery #ngtube #feedingtube #giproblems #1in100 #heartwarrior #hearthero #bravelittlewarrior #momlife #newmom #heartstrong #momstrong #invisibledisease #invisiblewarrior #heartcatheterization #awarecauses
j tube is in! I’m in the worst pain ever so we’re pumping me full of IV pain medicine but I’m so happy I don’t have the NJ tube anymore. We’re hoping I’ll get out of the hospital by Saturday but we still have to wait and we how I’m doing. Thank you all so much for all of the love and sweet messages!!!
Everything has been taking a backseat to Mario Kart! 🏎 #nintendoswitch #nintendo #feedingtube #feedingtime #cancersucks #fuckcancer #nevergiveup 💪
Baby Pete joined me for my wall sits today and surprisingly he didn’t attack me at all! He’s just really cute and my legs look good and wall sits are forever one of the easiest/hard exercises to do with no equipment literally anywhere. Besides like a desert. Happy Friday jr! #fitness #fitnessmotivation #jumprope #athomeworkout #motivation #inspiration #feedingtube #fitnessgirls #riseandgrind #noexcuses #movement #exercise #athomeexercise #legworkout #fitnessinspiration
Good Morning Friends Today I Was Scheduled For A Platelets Transfusion But I Didn’t Need It I Make Counts From Tuesday To Today💪🏼But I Still Have 5 More Days Of Chemo,Monday Is My Last Dose And On Tuesday Im Scheduled For A Platelets And Blood Transfusion ...Also I Had Speech Therapy But It Got Cancel.....I Have A Free Day Im Going To Spend It With My Mom And Dad..I Hope They Take Me To Eat Pho😋😋😛 #childhoodawarenessmonth #braincancerawareness #teamsofiis #cancerpickthewronggirl #morethen4 #kidsgetcancertoo #childhoodcancer #gogold #powergirl #braincancer #brain #stage4cancer #ngtube #SPNET #nohairdontcare #nohairnoproblem #feedingtube #ngtube #stanfordchildrenshospital #stanfordchildrenshealth #fuckyoucancer
*HTTPS://WWW.PAYPAL.ME/BEAUTYINHORROR* *PLEASE DONATE AND SHARE!* #JesusChristmasOnAWholeGrainCracker Completely wiped out and drained😖 from the 2 open abdominal surgeries I had at Stony Brook last week and the insane blood loss due to severe hemorrhaging from my internal organs and a very fatal form of #BuriedBumperSyndrome from my #GJ #FeedingTube . Going to shut down and just try to rest a teeny tiny bit for now😫 PLEASE continue to donate and share my #Fundraiser ... I need a flipping miracle😇 For now, please enjoy this AMAZING temporary makeup tattoo that I got yesterday at the carnival that was held here at the nursing home... #BeautyInHorror and #BeautyInHorrorProductions will always live on💚 P.S. Maybe I should get this as a permanent #Tattoo ?!🤔💚😻 #YayOrNay #HospiceLife #EndOfLifeCare #BeautyInHorror #YouDontHaveToBeLonelyAtFarmersOnlyDotCom #DeathPositive #BeyondDeath #TheEndIsOnlyTheBeginning #ImOutOfOrder #Gastroparesis #SMAsyndrome #SMAS #InterstitialCystitis #PelvicFloorDysfunction #Endometriosis #SepsisSurvivor #StrokeSurvivor #CancerSurvivor #TooManyChronicIllnessesToList #IWannaBeInked #ThisMommaWantsHerFurbabies
It's how we absorb nutrients It's how we get energy Our guts are so important!! ..this is an example from my family...My fourth child was born early and small, his hair started growing after he took flourish, his acid reflux went away, his gas went away, he pooped for the first time in 6 months on his own... For us this was a miracle-- he can't tolerate dairy, nuts or wheat-- so finding an all natural, fresh and never Frozen probiotic, that was safe for a preemie, was impossible to find! Let alone a probiotic that was effective!! What could flourish do for you and your family?? Risk free-- 30 day money back guarantee-- You have nothing to loose-- 👉kristadewit.entegrohealth.com #guthealth #health #acidreflux #foodintolerance #allergies #preemie #children #preemiemom #iugr #feedingtube #freshneverfrozen #entegrohealth #flourish #flourishjunior #
"I love the big Squeasy because I can leave it in my bag empty and it takes up zero space. I see these becoming an awesome travel and diaper bag essential." (📸: @dahliamarieandme ) . . . . . #foodpouch #kidapproved #kidfood #onthego #easymeals #healthyeats #kidlife #toddler #momwin #momapproved #kidfriendly #healthykids #busymom #foodforkids #toddlerlife #momblogger #mombloggers #momblog #mommyblogger #mommyblog #sahm #homemade #feedingtube #tubie #squeasy #squeasygear
Thank you for keeping up your fight, even if you don’t have a choice 💛 Just a reminder that you’re pretty awesome. • 📷: @joshuafooo #chronicloveclub
صعوبات البلع احدى المشاكل التي يواجهها عدد من الأطفال نتيجه لعدة أسباب منها الاعتماد على أنبوب الغذاء (NG Tube)أو (G tube) لمدة زمنية ، المشاكل الحسية ، ضعف العضلات ، ضعف في إغلاق الشفتين ، التحكم بعضلة اللسان ، ضعف المضغ ، ابقاء الطعام في الفم لمدة طويلة ، بلع الطعام بدون مضغه. يقدم مركز @giftedcounselingcenter جلسات تدريب لطفل تتضمن تقوية العضلات وتقليل الحساسية وزيادة التقبل لنكهات و نوع قوام الطعام ( المضروب او الصلب) لحجز جلسة استشارة او كورس علاجي يرجى التواصل على ‭99301499‬ - ‭24896069‬ #dysphagia #علاج_وظيفي #إعادة_تأهيل #علاج_طبيعي #مدرس_خصوصي #feeding #feedingtube #feedingbaby #feedingtherapy #feedingwithlove #feedingprogram #feedingproblems
Go Leafs!!!! We are super excited about the upcoming hockey season! #baby #cutebaby #preemie #35weeker #ngtube #feedingtube #vsd #hockey #toronto #torontomapleleafs #torontomapleleafsfan
"I’m grateful for all the wonderful doctors who work with me to keep my daughter healthy." -- Keri V.
We are here to fight .. For a change For our voices to be heard For better treatment from healthcare professionals And for a cure 💚 Come join us at www.facebook.com/groups/facesofgp @facesofgp #gastroparesis #gastroparesisawareness #gastroparesisadvocate #findacureforgastroparesis #gogreenforgp #starvingforacure #gastroparesisfighter #gastroparesiswarrior #feedingtube #feedingtubeawareness #paralyzedstomach
Posting this even though I’m self-conscious about it not being perfect, because my shoulders do their own thing when they have to be moved in positions like this. Fun stuff. (Ow.) – Enjoying the cool air on the front porch this morning, before it gets too hot to be outside. Thankful for this blessing this morning. – Shoutout to @katefarms for the hat that 1. Helps shade my eyes and is comfortable, and 2. Is perfectly adjustable to accommodate cold packs underneath (look closely and you can see the corners peeking or on either side of my glasses, but that’s nothing)! Also, shoutout to @wildwood.church for the Salty and Lit tank (sorry you can’t see the whole shirt here)! – Front porch: check Beagle: check Feeds and saline: check Praise music: check Comfy hat: check Cold packs: check Mask to wear for MCAD (took it off for the pic): check Thankfulness: check Choosing joy: check Finding beauty amidst the pain: check.
Hello friends! I haven’t posted on here in almost a year but I wanted to update you on what has been going on. As most of you will remember we lost our beloved cat Sammi in November of last year to cholangiohepatitis and cancer. We only had him in our lives for 3 of his 8 years and he was sick for the last almost 2 years of his life. We love him and we miss him so much everyday. Over the course of his illness Sammi had a feeding tube 3 times. When he passed we were inspired to find a way to help other cats in need. Since we learned so much while caring for Sammi we wanted to use those skills to help other cats with special needs. We began fostering our first cat with @forgottenonescatrescue a few weeks after Sammi passed. Stay tuned and we will tell you all about our first foster, Olive! In the meantime enjoy this picture of Sammi in all his glory, feeding tube and all. ❤️ . . . . . #sammi #sammithecat #cholangiohepatitis #cancersucks #cat #cats #catsofinstagram #snowshoecats #snowshoecat #snowshoecatsofinstagram #mybabyboy #misshim #love #feedingtube #rip #restinpeace #fostering #newjourney #forgottenonescatrescue #specialneedscat #specialneedscats #specialneedscatsofinstagram
heres am actual update: my body crapped put from the make shift tube and the entire thing stopped working so we went to our local er who pulled it and put a foley catheter in its place, discharging me ans telling me to go to maine med when I got REALLY sick. y'all, pots or not, my hr was in th 120s ans I was already dehydrated and didn't even so labs. by 6am the next morning 911 was here because I was in severe SVT and my Qt interval was off the wall. I went straight to critical care and spent much time there until I was admitted and had surgery the next day. I had a picc line that was removed at discharge and was again spoken about the need for a port. great but I was still normal person sick (I think) and spent the night at my parents bathroom floor puking until once again I hit SVT and I passed out briefly. I thought mu fainting during those moments was due to SVT but they said its due to my long QT. (I've had long qt for ages and have to avoid a lot of things due to it but I didn't think it impacted me THAT much.. and I. can back ip what I'm saying I swear I'm not trying to copy someone I know that has severe long qt. mine is no where as bad as theirs, its just not good right now) anyway, hours more in critical care and a other picc line. I spent the night ans went home. that might, same thing, excepty potassium was so low this tome tjat I was in tears from leg craps tjat wouldn't atop. picc team Informed the er team they need to set up an alternative line bc putting a picc in everutime I'm there can be dangerous they already had suspected a thrumbus (sp?) and I agree so they reached oit to every doctor I have and idk what the next step is. I don't want this I'm scared of it but I'm also scared I'm gonna die all because we can't get access to correct my heart. its terrifying yo think about death at 28. also I had a seizire the other day and have a contusion on my mid back and then passed put on tjr er floor yesterday face first bc no one listened when I asked for help and yeah concussion. everything hurts, I'm tired. I'm worn... I just...#hospital #piccline #piccteam #iv #surgery #gastroparesia #feedingtube #gjtube #admitted #sick
I'm sick really sick. ci will be surgery tomorrow. have picc limme andpiv innzhouder #hospital #piccline #piccteam #iv #surgery #gastroparesia #feedingtube #gjtube #admitted #sick #snoonie #er #hypokymelmia #heartissues #svt #pots #dysautonomia
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