#gastrostomy

[positivelyqueer]

Happy Disability Pride Month to people with ostomy bags, nasogastric tubes, gastrostomies and jejunostomies.

[maternaratipico]

Oi povo. Tudo bem com vocês? Espero q sim

Bom, Alicinha nasceu de 39+2 por um sofrimento fetal que até hoje (após 3 anos) não sabemos o motivo; por ter sido uma gestação totalmente tranquila, sem nenhum motivo aparente! Fizemos alguns testes genéticos, outros exames pra fora, revisão de prontuário, biópsia da placenta e nada deu alterado!

Ficamos na UTI neo por 72 dias, 36 dias entubada e os outros 36 ficamos entre cpap, bipap, O2 livre, por fim conseguimos o desmame do O2 e fomos pra saga da alimentação.

Começamos a fazer alguns estímulos com a fonoaudióloga; peito, mamadeira, chupeta, chuquinhas… mas nada fazia Alicinha ter a sucção (dessa vez eu juro que pra mim foi por falta de estímulo suficiente dentro da UTI). Fizemos de tudo, mas ela não pegava de jeito nenhum! Tivemos que fazer uma gastrostomia (a famosa GTT), um furinho na barriga que chega até o estômago pra que ela conseguisse se alimentar, já que no hospital Alice não podia sair com a sonda nasoenteral (sondinha no nariz). Fomos transferidas de hospital e então fizemos a cirurgia pra tão sonhada alta 🥹🫶🏻

Foram dias difíceis, muitas inseguranças, medos, receios.

Ela nasceu dia 24/03/2020 quando a pandemia BOMBOU, não podíamos ter visitas, nem ajudas psicológicas, não conseguia saber de nada, ficava tudo escuro, sem graça, meu sonho desabou nas minhas mãos!

Maaas pra falar do relato do que foi viver o luto na UTI e sozinha, vou contar em outro post!

Ce gostou? Então dê um alô pra essa babyzinha 🫶🏻

[tubietips]

Types of Feeding Tubes

Whether you're preparing to get a tube, to visit someone who you've heard has a tube or need to learn all the types before professional placements starts tomorrow, here's a quick, concise guide!

To ridiculously oversimplify things, lean these 3 now:

NG & PEG

NJ, J-tube

IV line.

Well done!

To be more comprehensive,

The types are:

NG

ND/NI/NJ

PEG/RIG/G-Tube

GJ/PEG-J

PEJ/J-Tube

Then, some intravenous lines can be used for specialised intravenous nutrition:

PICC

Hickman

It's not actually as complicated as it looks, I promise!

Basically:

Nose to stomach or intestine

Or

Hole into stomach or intestine

Or

Veins

Enteral feeding tubes are ones which go into the digestive tract either through the nose or directly through the skin.

Think ENTER as in gastroENTERology

Sometimes, people need parenteral nutrition. This means bypassing the enteral. Parenteral goes straight into veins. That's PAR-enteral, not parental hehe ;) It's often called TPN for short (Total Parenteral Nutrition), especially if the person is dependent on it. Occasionally the term HPN is used if the person uses it at home. The H is for "home"

Ok. Back to Enteral tubes:

Nasoenteric Tubes (any feeding tubes that go in by the nose):

NG = nasogastric. Goes through nose into stomach. Quite common.

ND = nasoduodenal. Through the nose and stomach into the 1st part of the small intestine called the duodenum. Rare because nasojejunal is typically seen as preferable. Some NJs technically end up in the duodenum but may still be simply referred to as an NJ. My NJ often lands right at the juncture where the duodenum becomes the jejunum.

NJ = Nasojejunal. Through the nose , via stomach and duodenum into the second part of the small intestine called the jejunum.

NI = Nasointestinal. Sometimes this word might be used to include NDs and NJs on a product packet or in a medical paper. Nasoenteric may be a term used too

In essence, NG or NJ

Percutaneous (through-the-skin) Enteral Feeding Tubes:

PEG: Percutaneous Endoscopic Gastrostomy tube. Common.

RIG = Radiologically Inserted Gastrostomy. Often these simply get called PEGs anyway.

G-tube = Another word for either PEG or RIG.

PEG-J = PEG with extension tube inside to the Jejunum.

GJ = Gastrojejunostomy. Basically a PEG-J but doesn't necessarily have "percutaneous endoscopic" insertion. It could be radiologically inserted.

J-Tube = Goes directly through a hole made in the skin into the jejunum.

PEJ = A J-tube placed using endoscopy. Like RIGs, sometimes people still call radiologically inserted jejunostomies "PEJ".

So, G, GJ or J

Any feeding or placement into the intestine may also be called "postpyloric", especially in medical academic journals. This means anywhere beyond the stomach. The pylorus is the far part of the stomach before intestine.

BONUS/SIDE NOTE: Most feeding tubes are "single lumen" (lumen = inside channel) but double, even triple lumen tubes exist. Extra channels might be for extra hydration, medicines or "venting" stuff OUT such as painful excess stomach air. Usually medicines and extra water are done through ordinary single lumen tubes and a separate tube is often used if venting is necessary.

Now the Parenteral ones:

These are intravenous lines rather than what's typically classified as a "feeding tube".

PICC = Peripherally Inserted Central Catheter. This is the more common of the parenteral line types and usually short term. It goes into the upper arm. Inside the body the line goes through a vein into the chest, to the heart. Peripheral = opposite of central, so further/outer. (Catheter = tube that goes inside a body channel eg vein, urethra etc)

Hickman Line: This delivers nutrition pretty much the same way but goes in by the chest.

There are other IV line types but usually for medication or hydration rather than feeding. PICCs and Hickmans are often are used for medications too.

Why use gastric enteral feeding (NG, PEG etc)?

Can't or won't eat enough to meet nutritional needs.

Why Postpyloric/intestinal feeding (NJ, GJ, J-tube etc)?

As above but feeding into stomach is ineffective, unhelpful, intolerable or perhaps dangerous.

Why Parenteral (PICC etc)

Last resort if nothing else gives the necessary nutrition and/or balance.

Or if the person is "nil by mouth" but must get the nutrition

Occasionally, people have more than one type.

For example: someone might depend on a line in the veins but spend part of the day on a Nasojejunal feeding as much as they can tolerate, and have an old PEG site used for a tube for venting.

Another example: PEG fed and using PICC every so often to make up for some kind of deficiency.

So you've got the gist of it!

If you have any questions or if I've made any mistakes, feel free to let me know as long as it's nicely! :-)

Now for a pronunciation guide for anyone who needs it:

Nasogastric = NAY-zo-GASS-trick

Duodenum = DYOO-oh-DEE-num. Some might say dyoo-ODD-en-um

Jejunum = JEJ-oo-num or jej-OO-num

Percutaneous = PER-cyu-TAY-nee-us

Endoscopic = END-oh-SCOPP-ic

Gastrostomy = ga-STROSS-tum-ee

Jejunostomy = JEJ-ooNOSS-tum-ee

Parenteral = parENT-er-al

Radiologically = RAY-dee-ol-LOJ-ic-al-ee

Postpyloric = POST-pie-LOR-ic

Intravenous = IN-tra--VEE-nus

Peripherally = per-IF-er-al-ly

[alliyajoysjourney]

Today was a bad pain day. Today a stranger shook her cane at me for parking in an accessible spot - with a permit. Today I showed this stranger my feeding tube, ostomy bag and IVAD port-a-cath in said parking lot. She kept mentioning that I was “young and beautiful though” to which I replied “disability does not discriminate”. Invisible illness is valid. Mic drop.

• • • • •

[freddieos-mum]

Wednesday, when I picked Freddie up from nursery..

his key worker gave me a laminated sheet of three photos she wanted to show me of his day. When I glanced at the photos I was surprised to see a little girl sitting with Freddie in two of them, one of which she was cuddling him. I asked who it was as I didn't recognise her... until I looked closer and saw she was wearing a Disney princess dress. The dress rang a bell as I saw her that morning. I only saw her because I turned to look at who had made Freddie's face light up so much and there stood this little girl in her princess dress. After I dropped him off I spoke with James and told him about the little girl Freddie was clearly fond of.

You see, having a none verbal child means I don't know who Freddie is fond of, who he's friends with, or who he plays with. He can't come home and tell me about his day or who he sat next to at lunch. I know no names other than the ones I've picked up being there. On top of that he has one-to-care, so his key worker isn't also responsible for another child or two so it's not like I'm aware of children he would interact with. I know he loves nursery. I see his face when we arrive. I know he adores his key workers as I see the way he looks at them. I've even witnessed children talk to him, say hello when he arrives. It's not the same though, it doesn't compare to you're child being able to tell you what they did and who with.

Seeing these photos made me emotional. It was lovely to see someone Freddie is friends with and them interacting. Then I knew why he smiled so much when he saw her - he was saying hello. It was an insight into his day, and it was extremely reassuring. He does have friends, they do play with him and they do like him. That's all any Mum wants, especially a Mum of a child that is socially very different, for them to be okay and have friends.

[freddieos-mum]

The highs and lows of Mito...

That Friday lunch time in early July when I took Freddie to hospital believing he needed his sinuses cleared out and was told they were changing him to enteral feeding immediately it was such a shock. As I've mentioned before, James and I knew it would happen 'one day' but we believed one day was still quite a way off. Of course I knew his development had regressed, I could see his head control was poor and I knew he wasn't as strong as he had been. Looking back, I'm not sure whether I thought I could rectify it myself or whether I just didn't understand how far it had gone.

Over the summer, part of coming to terms with enteral feeding also meant grieving certain aspects of our lives. Firstly there were family meals around the table, something which I had emotionally invested in during my pregnancy. We never ate around a table growing up and I have had various battles with food during my life, but I had reached a stage I enjoyed cooking and enjoyed mealtimes. I was looking forward to taking care of my own family in that respect. As well as that Freddie and I had our routines, one of which was late afternoon snuggle on the sofa and biscuits together. Moving to a life where Freddie's food when into a tube and he couldn't manage more than a yoghurt orally would be another period or readjusting and grief. It didn't only affect me, it affected James too. We have always enjoyed meals out but avoided eating out or with people all summer. It was too hard. Mealtimes weren't happy times for anyone in our house.

The thing about mito is, you do grieve and you do readjust. You have to. That's just the way it is. You refocus on the important things that matter and you concentrate on the happy moments and the positives. More than anything it's remembering that it's about him, it's about Freddie not me.

Then the game changes again!

Master Cheese has been getting stronger since he's been enteral fed and even more so since the gastrostomy has been fitted. Physically he's come on leaps and bounds. Not just that but he's rediscovered his love for oral food. He screams with delight if he sees someone eating - he wants it too. We've started giving him more and testing him slightly with what he can manage. He's using his tongue to push food around his mouth and chewing, quite possibly, more than he ever did before. He still has a long way to go in terms of regulating how much he puts into his mouth one go, but then he's always had that problem. Don't we all? Sometimes I shove all the chocolate in mouth because I don't want to share too.

Anyway, to cut a long (sorry it's already been dragged out) story shorter, for the first time in almost four months we sat around the table and ate a roast dinner together today. Freddie had his own bowl as well as vegetables to pick up and eat. He thoroughly enjoyed himself and James and I savoured every moment of that meal. The type of mealtime we thought was gone forever in our house.

I know it will go, I know mito will get it's own way eventually but every time our amazing boy puts his mind to something he gives us more precious memories together. Whats more, the pressure is off in terms of making sure he gets enough oral food. Eating is purely for enjoyment.

Like everything else, I use to take family mealtimes for granted. I never ever will again and I intend to make the most of the ones we have.

[freddieos-mum]

This Week...

has been a bit of a funny one, Master Cheese appears to have had Hand, Foot and Mouth... again!

Freddie came from nursery absolutely shattered on Monday. He slept in the car the. Slept on me for a further two hours once he was home. We knew a girl had been sent home that day with suspected chicken pox (gasp) but Freddie has been immunised so I was pretty confident he would be find.

That evening, at bath time, James noticed some spots. We proceeded to have a terrible night and by morning he had more spots - mainly covering his nappy area but a couple on his hands. James was at work so I called the symptom management team at the hospice, they then liaised with the Hospital and his nurse came to see him. In my opinion, a couple looked like chicken pox and his nurse thought the same. The Hospital had already said they wouldn't do anything unless it got really bad so we had to watch and wait. Which is really bloody frustrating as a mum, knowing things can get really bad really quickly but then I tell myself it's best for Freddie if he can fight things on his own.

As the day went on he was a little tearful and clingy and the spots we appearing, although very slowly. He got some on his feet and ankles. His nurse then left me a voice message and it suddenly clicked... he'd had ulcers at the weekend. I'd counted three. He had a huge one at the end of his tongue. Hand, foot and bloody mouth. I told his nurse that's what I thought it was. It started in his nappy region last year too.

James came back from work after his last appointment which was earlier than planned. We were preparing for another shit night- which is exactly what we got. Freddie was awake for hours, tossing and turning again. We were expecting to see him absolutely covered in spots on Wednesday but he wasn't, not only that but the first one which had appeared were far less aggressive. That was hour the day continued. Instead of spots appearing they were disappearing.

In our family, this will be classed as a small miracle. I think this is the first time Master Cheese has had an illness (other than a common cold) that he's managed to fight off without medical intervention. Maybe he built up immunity last year, or maybe his antibiotics are helping? I have no idea but it means we've still been able to come to The Treehouse this weekend for our break. What's more, they had a family cancel so have extended our stay to two nights instead of one.

This week has made us feel like our luck has changed a little. We needed it. We need a break. A change. Life was starting to take it's toll on me, and James I think. Mentally, physically and emotionally. It's hard to keep going sometimes, especially when you feel like you fight for everything but don't get anywhere. Hopefully we'll come away from The Treehouse feeling a bit more refreshed too (or is that just asking too much).

[freddieos-mum]

This is a photo of breakfast time for Freddie... this is our normal. Breakfast consists of; levetiracetam, omeprazole, erythromycin, glycopyrronium bromide, co-quinone 10, Frebini original (or fibre, depending), water and a yoghurt! This is just breakfast, he has more medications repeated throughout the day plus movicol, inhaler twice daily and every other week he has azithromycin. I'm not even going to list his eczema creams or routine. Also to note, each time he's hooked up to a Frebini feed he's attached to the pump for 50 minutes. Sometimes I forgot how normalised we are to this routine. Thought of a weetbix and sippy cup of water seem like a different life.