What I learnt from being tube-fed by feeding tube for a week (Part 2)

This post is the second post in which I share what I learnt from consuming all my nutrition by feeding tube for a week in order to better understand what families of tube-fed children have to go through. Part 1 can be found here.

Staying awake is not so easy

tag3On day 3, I was more tired than anytime I could remember, usually I’m over the top with energy in the morning. But after I picked up my friend Alexander from the train station I really had trouble staying awake.

I guess there were 3 main reasons that I could identify:

1. I slept maybe 5 hours (working late on day 2), which is just too little for me.

2. A deficiency of nutrition. On this day, my daily intake was adjusted by Marguerite to as little as 1’200 kcal (which is far too little for my age, height and weight) in order to slowly adjust to the feeding tube and avoid vomiting, which particularly at the start, is known to be a common side effect of tube feeding. 

3. The tube caused quite a strong irritation on my nose and throat tissue on day 2. Now on day 3 in the morning I felt a painful sore throat and a swollen and running nose and teary eyes.

Therefore, maybe my body responded to all of this with being tired. Probably I would have needed more than my usual 7-8 hours sleep to counterbalance it, but didn’t get them.

bakeryMy first meal in public

We went to have breakfast in this really lovely bakery in the middle of the historical part of the city of Graz. I had my syringes and food ready and started feeding myself. I realized then and there that this was the first time I was feeding myself in a public space. None of the people looked in funny ways.

I asked myself whether I should ask the waitress whether it’s ok to consume feeding nutrition, in the same way that you ask when you bring your own food and drinks to a restaurant.

laptopThen I decided against it as I’m sure no tube-fed person would ask the waiter every time he or she goes to a restaurant. A girl from the other table was looking repeatedly, but not annoyingly so. I ordered an empty glass (for the formula) and a full glass of water to rinse the tube after feeding.

I must’ve looked really sick to all the people on the other tables and they seemed more used to that than me. Interestingly, Alex hated to watch me feed myself and he’s not the first person I’ve met behaving like that. It’s strange, but I think many people have trouble seeing other people undergo medical treatment.

After this breakfast and the short night, I was so tired, I fell asleep in the tram on the way home and Alex was worried I had passed out! But I didn’t – so far so good. The rest of the day was mostly meetings as far as I recall. I’m sure I had lunch, but don’t remember.

Dinner – A tough evening amidst all the temptations!

The dinner was interesting again, since my family enjoyed a lovely meal with pancakes and Nürnberger Würstchen (german sausages).  

dinerI on the other hand forced myself to stay strong and didn’t eat or drink anything orally, despite the strong and tempting smell of grilled food! Can I just say, I LOVE grilled food. If I could, I’d have it for breakfast, lunch and dinner! However, the smell made me more hungry than I was before and for the first time I found myself opening the fridge by myself and looked enviously at the pickles that I didn’t allow myself to eat (I also love pickles, especially the sweet and sour kind).

I’d pledged to only consume food and drinks by tube for a week, so I’m sticking with it. I was thinking to myself that it’s going to be a long three days to go.

By the evening, I’d gotten much more used to my tube and barely felt it in the back of my throat. Also for the first time my nostril through which the tube runs was not constantly clogged, although I still felt it in my nose.

Things I’ve thought about over the past days

I also must say I’ve learned quite a few things about tube management in the short time that I’ve had it, but the things that have really blown my mind are the social and psychological components of being tube-fed.

Things I’ve learnt regarding social interactions

What’s likely the most profound experience I’ve had so far actually has nothing to do with the process of feeding via tube or the mechanics of it. But it has everything to do with how my family, friends and strangers have reacted to the feeding tube. In short, their reactions have been all over the place and I feel like with many of them, I’ve gotten to know a whole new side of them through this experiment.

My family’s reactions:

Let’s start with my family: While my mum called me crazy before the experiment, she supported it, got the needed supplies and inserted the tube. She’s also been very present and helpful these last days with any questions I had and provided ideas. My dad however didn’t participate as much. He would watch me and answer questions if I had any, but other than that he remained unusually quiet. I haven’t asked him about why that is yet, maybe we’ll get a chance to have him comment below to share his perspective and why he behaved the way he did.

My brother Noah helped me with filming when I was feeding myself and he was quite interested, didn’t mind the tube much. He also let me join him in playing soccer with him and his friends, which indicates to me that he didn’t want to hide me or the tube. My Viennese sisters commended me on my strength, but since they and the rest of the family were not in Graz, their experience was not comparable. Interestingly, my step-sister who spent some time with us in Graz absolutely despised me being fed by tube and couldn’t watch it, she asked me to call her name when I was done and only then she would re-enter the room! By contrast her lovely children, age 7 and 10 where more than interested.

The rest of my family (I have 11 siblings in total, yes 11!) kept relatively quiet, I didn’t hear much from them and even since the experiment, they haven’t said much about it. I don’t know why that is, maybe they were busy with their stuff, maybe they didn’t want to contribute to a potentially heated debate. My grandparents were very supportive and wondered about how it feels! So after having looked at everyone’s reactions to me feeding enterally, let’s add to it the importance of orally consumed meals.

The meaning of food in my family

Having started NoTube as a business with a clear focus on children and food, I guess it won’t surprise you that both cooking as well as consuming meals is central to our family. It’s hard to overstate how much our social bonds and daily interaction are centered around food. In our work, we help children learn to eat and in our private lives, our entire family is always on the hunt for the next great restaurant or cooking tips for delicious dishes. So when I decided not to eat for a week, it created a bit of a weird situation in the family system. Suddenly, I excluded myself from buying, preparing and consuming food.


Family mood being a bit down

Have you ever been at a dinner table, maybe with a friend of yours and he/she didn’t eat anything while you were supposed to eat? It’s a weird and uncomfortable feeling. It might even make yourself feel bad about eating. To some degree, this was the feeling in my family in these last couple of days. I participated in the meals by sitting down, but either my plate was empty or I put it back into the cupboard.

Maybe I’m just making this up, but I feel like it impacted the family mood negatively to a certain degree. Also, I tend to also sometimes be the cook in my family, initiating meals. Of course, this didn’t happen either. So I think maybe my family as a whole ate a bit less that week or with less enthusiasm.



Missing out on bonding with the child

From my perspective and in the context of my family, being tube-fed felt isolating. I love the mood that comes with having just had an excellent meal. Often times in my experience, you bond closer with the people you’re having the meal with. Not having had that feeling for a week left me empty, yearning for it. Being a proud uncle to 11 beautiful nephews and nieces (a consequence of having 11 siblings) I see first hand the joys that come with feeding your child and them making their first moves to eat by themselves.

Watching my nephew Gavriel dip his cucumber sticks into water is an activity I never want to miss. Watching my niece Rosi consume a breakfast that’s half the size of her entire body is a joy – time and time again. Even remembering the time when I babysat 3 year old Jonas and he proudly showed me his big pile of poop, which looked more like a giant Anaconda, is a memory I will cherish for the rest of my life. To this end, I cannot begin to imagine the emotional void that moms & dads of tube-fed children around the world feel every day as a result of simply not being able to feed their child in the way that evolution designed it. Having watched my siblings feed their kids, I’ve witnessed first hand how important this parent-child interaction is for both parties. It’s a sad thing to know that so many parents are missing out.

Similarly, imagining some of our parents meet up with their friends while watching them feed their kids must be a painful experience. Not being able to send your child to kindergarten because no one there agrees to feed it there must be a painful experience. And other parents blaming you for your child’s tube dependency must be a painful experience. All of which I cannot even begin to understand.

From what I’ve witnessed in the professional community of doctors, nurses, speech therapists and all the other great people working to help families of tube-fed children, we often tend to obsess over medical side effects, but tend to overlook these crucially important psychosocial side effects. At NoTube, we always say that the therapies we provided is meant 50% for the child and 50% for the parents. Too many centers obsess over the child and don’t take the parents into account. But when we look at situations like the ones above, parental involvement is so crucial, after all they are the child’s biggest supporters in the entire world!

Post your thoughts below and I’ll be happy to respond to any questions!

Yours, Samuel Scheer!