I dag fekk eg heilt ny sonde av mamma mi, fordi den gamle gjekk potte tett.
Eg trur det er probiotika- pulveret som sakte har tetta sonda, det blir satt inn 2 gonger per dag.
Eg får enda meir skyllevatn etter probbisen no, då håper eg alt går fint.
I går kasta eg opp, det er skummelt. Så hadde ej tjukt dusteslim og var utilpass.
Vi satsar på det ikkje skjer meir no som sonda er ny, det er ofte litt vanskelig å vite kvifor ting og tang hender.
Eg er betre no, så då kryssar eg tottisane mine på at eg ikkje blir sjuk 🍀
Eg skal kle meg ut som ein enhjørning i dag, sidan det er jonsokaftan 🔥🎉🦄
Pappa min er bålsjef i toftestøda, han skal sette fyr kl 19 å då skal eg sjå på!
Det gler eg meg til 😍
Eg ønskjer alle mine vener ei fin feiring!
Klem frå vesle Adele Elvira ❤️ #tubie #sma1 #midsummer
I tried something tonight I've never done before. Normally I blend 'meals' for Imogen so she gets 6x different blends per day. I cook in large batches and freeze into appropriate portions. I find she gets good variety this way, but since she's now on a continuous feed I'm finding it really annoying to use the blends one at a time consecutively so they don't mix because it grosses me out 😜(especially mixing a fish blend with a meat blend 🤢). So tonight I made my first ever skeleton blend to be used throughout the whole day tomorrow. I wanted a blend that had ingredients that would go well together plus also be the right consistency plus also have enough calories without being too dense. The colour is seriously disgusting but overall I'm pretty happy with how it turned out, hopefully Imogen tolerates it! In this blend I have peach, mango, strawberries, blueberries, carrots, butternut pumpkin, kale, peanut butter, quinoa, raw organic honey, blackstrap molasses, EVOO and bone broth. About 1070 calories in about 1L. #blended #blendeddiet #blenderized #continuousfeeds #vitamix #vitamixaunz #tubie #blenderizeddiet
celebrated R's birthday right 🍦 While she's still learning how to swallow and eat, she loves practicing (especially by herself) with whipped cream and ice cream.
#tubie #trachkid #nicugrad
"This is my husband Chas with most of our children. One birth child who passed of cancer and we have adopted 7 special needs children. All have feeding issues. Six of our seven children at home are totally g tube dependent. Loved this man before the children existed. Love him more today because of the way he loves our children." -- Tracy K.
Meet the peg button 🖕🏻 It hurts 😅 and feeding is a no go apparently according to my tummy BUT at least I don’t have a big tube hanging and getting caught all the time 🌈 Insertion started off a bit crap....I had a hypo and no one could get IV access for glucose and fluids but after many attempts and the on-call anaesthetist being stood down, my doctor got a line in 😌 but after fluids and glucose I had the producer and woke up having another hypo so had tablets which I just vomited up again 😂 But since coming home I’ve been absolutely cream crackered and it hurts but I’m not disappointed....I kinda expected this and I know my doctor did too. So for now, I’ll embrace the low profile life and enjoy my day with mi best friend 💖🌈🦄 #chronicillness #gastroparesis #tubie #button #eds #type3 #ehlersdanlossyndrome #fibromyalgia #myalgicencephalomyelitis #posturalorthostatictachycardiasyndrome #smile #saturdayvibes #myfabulouslife
I’m sorry I’ve been so quiet recently, things have just been a bit crazy.
New symptoms and starting new drugs,
and now in the process of switching from taking my medications orally to taking them through my NJ tube, because I am still vomiting which means I’m not absorbing my medications because they’re not in me for long enough (but it’s a lot more complicated than you would think)
Started bleeding a lot of fresh blood rectally (which isn’t in use as it’s sewn up, because I have my ileostomy), so I have no idea why it’s bleeding...
My PTSD symptoms have been so much worse recently and not being able to sleep is just making it so much worse
Awaiting an appointment for my pacemaker trial which should be in the next few months
And obviously my usually pain and everyday symptoms that I deal with every day.
Just a lot of stuff and it’s been taking its toll on me mentally.
It’s always just one thing after another, and I have no choice but to push on despite all that’s trying to take me out, and instead of getting overwhelmed with all the crap, and focusing on all I’m missing out on, I’m choosing to see, enjoy and be grateful for the little things, even the things that seem insignificantly small ♥️
The days all blur together! I know Bella's home and that's about it. 🙈Dust went and got me an agenda to help keep all of her appointments straight. My old one is outdated already! She sees a home health nurse, regular pediatrician, speech therapy, nutritionist, developmental neonatologist, dermatology, her surgeon who did her gtube, and help me grow! She'll have another eye exam and do special rsv prevention shots! Phew! We took her to her first doctors appointment since being home the 2nd time. The anxiety was gone and we felt very comfortable. She has gained and is 6lbs 14ounces. Once again the office was accommodating, even meeting us at the side/back entrance to avoid extra germs and swiftly letting us go to a private room. We really liked our doctor. We discussed putting Bella on a pump for feeds instead of gravity so that we could be more consistent with timing and rate. If we go too fast she spits and gets a belly ache. He said he didn't even really know how to order one! So we're learning having a preemie is unique, then add her birth marks and feeding tube and you're in your own league! Still trouble with medical supplies. We received the feeding bags and gauze but have to fight to get more than 4 syringes per month 😒😠They suggested we reuse them but at this point Bella's so small and it's vital to keep things as sterile as possible. Hopefully we can get to the bottom of it. Our families have been phenomenal. I have no idea how I could juggle a baby with all these appointments, unpacking, making a zillion calls, and sleep without them. Isn't this outfit adorable? I had picked it as a going home outfit option months ago. Little did I know that it'd take her almost 4months to fit in it! She enjoyed the car ride and is doing well. Also a wonderful friend brought us a delicious meal. It helped relieve so much stress and was so darn good. I seriously got teary eyed by the love put into it! 😍(pineapple chicken with green beans, pot stickers, rice, and cinnamon sugar pots chips with fruit salsa for dessert) #werehome #homeiswheretheheartis #nicugrad #nicumom #preemiestrong #micropreemie #niculife #gtube #tubie
Sent out these pretty dandelion pieces today along with a bunch of other goodies! Still some sizes of these available on the shop 💙 I’m in penticton for a few days now visiting my parents and puppy, back Wednesday ☺️
All dressed up on a Friday night ✨👑
Today’s socks because your environmental foot print isn’t the only one you should be conscious of. @consciousstep
is working hard to keep awareness of the needs around the world one step at a time. For this pair, they’ve teamed up with @glblctzn
to help end poverty by 2030. Visit both of their websites, snag some rad socks, & share your decision to take conscious steps. #consciousstep #globalcitizen
New! G tube pad grab bags on the website...follow the link in my bio to get yours before they’re gone!
Добрый день, дорогие наши друзья! Вот и закончился первый месяц нашей госпитализации в РДКБ. И хотя изменений за этот период произошло немало, да и Святик не давал скучать ни маме, ни докторам, все же обидно, что главное событие - операция по удлиннению кишечника и закрытие стомы - до сих пор не произошло.
Впрочем, всю последнюю неделю Святик радует нас хорошим самочувствием и есть надежда, что операция все же состоится.
Еще одна хорошая новость! Как вы помните, наш катетер Broviac, через который Святик получает свое жизненно необходимое внутривенное питание, требовал срочной переустановки. Учитывая количество общих наркозов, которое пришлось перенести малышу за свои 2.5 года, доктора откладывали эту процедуру как могли и планировали произвести замену катетера одновременно с операцией на кишечнике. Но в понедельник, в который раз оценив все риски, Святослава забрали в операционную и вернули мне спустя два часа с новеньким катетером и парой свежих швов на груди и шее. Наш мальчик тяжело отходил от наркоза, много плакал, но уже к вечеру, как всегда, радовал маму и медсестер своей искренней улыбкой.
Теперь мне приходится следить за сыночком особо тщательно, ведь маленькие ручки так и тянутся к новому бровиаку. В понедельник будут снимать швы, а до тех пор делаем перевязки.
#помочьСвятославу #broviac #centralline #broviaccatheter #shortbowelsyndrome #shortgut #shortgutsowhat #tpnbaby #shortgutbaby #lifeline #gtube #tubie #ostomy #ileostomy #tpn #hirschsprungdisease #hirschsprungsbaby #saveSvyatoslav
To our friends and friends we don't know yet, if you are at #CMSA18
please visit us at Booth 733. Say hi to Katie & Jeff!
Introducing our friend Puesdomonas!
This is an actual, non edited photo.
Puesdomomas is a common bacteria found in soil and water but also loves a damp trachy site. It doesn't really affect healthy people but is very common and can have serious effects amongst respiratory patients such as those suffering with Cystic Fibrosis. Should it get onto the lungs it can cause a type of pneumonia.
Joel has been colonised (aka it lives on his neck but is not active) since he was a few months old. He has a medication that keeps it at bay but it loves his cold, wet neck in the winter and his hot, sweaty one in the summer. Literally the hardest thing to get rid of. Any flare ups show as green tinges on his dressings and a nice fishy smell (yummy). We would then keep his site clean to prevent symptoms occurring.
What you see in this photo is Puesdomonas that has shown itself on Joel's bib (as it is covered in his lovely secretions). We did a trial off Joels medication a couple of months ago and the bacteria decided to let us know what it thought of that and came back worse than before. Unfortunately this then helped grow Strep B...another infection that doesn't cause many issues in healthy people and you'd probably never know you had it. This infection however has left Joel's neck very sore, smelly, weeping and his secretions very thick and mucky.
After 4 weeks, 1 course of meds that didn't work, a trip to A&E to get assessed and a 2nd course of meds, all being well this infection will go away.
Bye, bye horrible bib!
#babyjoel #bib #puesdomonas #bacteria #germs #infection #respiritory #sick #medicine #medical #trachy #tracheostomy #gastrostomy #gtube #gtubebaby #tubie #tubiebaby #floppylarynx #laryngealcleft #cleft #trachymum #bloggermum #blogger #bloggers #blog #mindingthegapuk
Guess what friends?! We have TWO new pride x disability shirts on the shop now! 🌈 We have this graphic on a super cute ringer tee and a second shirt that I will be sharing later! ☺️ Both can be found in the link in my bio. Happy pride 🌈💕 #loveislove
was a Mexican style bean burger 🍔, pasta 🍝 and a side salad 🥗// its so lovely being home! its nice to eat food i want to have rather then shitty hospital food 😊 just going to have a relaxing night of going to the shops with my mum(where i’m going to get some pre drinks for tomorrow 🥂 🎉) and just relaxing💁♀️ its so nice to be able to have leave; just gotta prove to my doctors that i can maintain and hopefully i’ll be discharged soon fingers crossed 🤞
"...unless we can show that parents are choosing a course of care for personal gain or willfully causing harm, parental perception should be the central determinant of whether a nonverbal child is suffering."⠀
An issue close to my heart as the parent of a medically complex non-verbal 14 year old. Who do you think should have the final say in a child's care - the parents or the physician?⠀
From the article: "The recent story of Alfie Evans, a British infant who died in April of a neurodegenerative disease, has reignited the international debate about how we think about medical care for children with incurable conditions. As in the similar cases of Charlie Gard and Isaiah Haastrup, a U.K. hospital turned to the court system to decide the fate of a child with an apparently incurable condition against the wishes of his parents. Much of the debate has been focused on the British medical and legal systems, and why these situations seem to keep cropping up there. After all, pediatric life-limiting conditions are no less common here in the U.S. ⠀
But I believe we need to ask a more basic question about where the enormous distress over these sorts of situations comes from. Why do these cases more than any others seem to arouse moral distress and media outrage? Why are these the stories that rise to international attention? One assumes that all parties involved wish only the best for the child. So how can multiple parties with a child’s best interest in mind disagree so violently?"⠀
Find the remainder of the article through the link on our Facebook page (@gusgear
#warrior #disability #advocate
#qualityoflife #healthcare #vascularaccess #totalparenteralnutrition #feedingtube #tubie #autism #gusgear #ostomy #dysautonomia #ileostomy #colostomy #centrallines #gtube #chronicillness #shortgutsowhat #shortgutsyndrome #shortgut #broviac #hickman #sbs #raredisease #gastroschisis #hirschsprungsdisease
Oh how long I've waited for this moment! This simple moment of normalcy most mommas get to enjoy within a day of bringing their babies home. I woke up at 1:30am for her feed, scooped her up out of her bassinet after changing her and held her to my chest! Although Isabella feeds differently than others (feeding tube using a gravity bag hung on an IV pole)...this special moment in time captured our "normal" and mundane middle of the night feed. No waiting on nurses to bring formula. No assessment. No charting. No measuring. No wires. Just my baby and I snuggling in my bed in our home. 😍Darling it's been worth every minute of waiting. Welcome home. #nicugrad #nicugraduate #peaceoutnicu #nicumom #gtubebaby #aintnothingbutagtubebaby #tubie #micropreemie
Just a boy and his dog 💙🐶 .
Out of the 3 puppers, Gordon is the one that takes most to Jackson. He was the one we were most worried about, not only because he’s a big behemoth of a dog, he takes giving love and affection a tad too far. He surprised us the most with his patience and just needing to be around his furless baby brother. Now that Jackson is so active and sometimes not that aware of his surroundings, Gordon just lays there and allows him to do as he pleases. He’s a good pupper 💙
| 5 D A Y S L E F T | This day last year I was getting my pacemaker + leads removed: a risky surgery that I was slightly freaking out about [ok not just slightly]. Three doses of Versed and I was finally calmed down enough to take these classy photos with the best friend a gal could ask for. I’m so grateful for all the support I’ve had through the crazy adventures life has thrown my way✨.
There are only 5 days left to get your “Joyfully Rare” t-shirts! All funds go towards treatment. I’m also doing a #GoFundMe
to raise funds. We’re 1/4th of the way there. I need help getting the word out, will you help? Thank you so much♡
"Malcolm has the best papa in the world. When he was born not breathing and faced an uncertain future, his papa loved him fiercely, no matter the outcome. Today we celebrated Malcolm’s 4th birthday!" -- Ashley H.
Prayers have been answered and my feeding tube was removed today!!! I am so unbelievably grateful. The first picture (my husband is always making me laugh) is a good indicator into how at ease and confident I felt going into this surgery but the truth is we had no guarantees that my tube could be removed. The second picture was the moment I found out they removed my feeding tube. The weight and worry of this last year was immense. Our bodies are amazing and I'm in awe at how far I've come. The power of prayer and positive thoughts are everything. I cannot bathe or swim for a couple weeks but already, just hours after removal, the amount of leaking from my stoma site has decreased significantly and as you can see in the next to last picture the site is already starting to close. I will always have my "second bellybutton " as a physical reminder of this extremely difficult year but it is the mental strength and fortitude I've gained that will really leave it's mark.
PS, if you live around the Springfield, MO area and know of anyone who could use feeding tube supplies and formula (Vital AF and unopened of course) please reach out.
#gjtube #nomore #tubie #pasttense #imabadass #strongereveryday #spoonie #spoonielife #thankful #blessed #chronicillness #healing #gastroparesis #esophagealdilatation #esophagus #esophagealdysmotility #dysmotility