Do not worry about the way he looked. He was actually really nervous about changing his feeding button, in real life, he is a happy boy, exploring and discovering life at his own pace ❤️.
Hope this piece of sharing finds you well and healthy. Honestly, I am not sure why I had never had the gut to write about this as a blog. Actually, I had changed his feeding button countless times, from a newbie tube-feeding mom with hands-voice shivering to the more-skillful tube-feeding mom, still nervous but more calm. I guessed the reason(s) why I had not brought myself to blog about it was because I was still overcoming my myself — overwhelmed by the journey I needed to go through. I was still battling the fear of unknown. I was feeling lonely back then and yet I didn't want to show it to people by blogging about it. Yet, often, I found myself hoping people would know this journey and to gave me a support. It was a complicated mixture of feeling. Yet, I also know, this was my journey, and I had concluded I wanted to just blog about other stuff BUT this one.
For me to blog this today, I am officially being break free, not from the judgmental voices from people, but the whisper soft judgemental voice within me. In short, I am free from self-pity when I realise I am able to write about this without feeling sad, but rather, honestly, just want to share with you guys another small snippet of my life (besides food blogging, walking at malls, family time, etc).
Or we call it gastrostomy feeding tube. Gastro= Stomach.
Jansen had his gastrostomy surgery done when he was 3-months-old. Due to his CDH (you Google about it ya, I won't blog on this again, I blogged about it long ago 😁), he also had severe reflux which at that time, doctor thought it would good for him to be fed straight into stomach so that food did not need to bypass his lungs, they were afraid food would enter wrongly into his lungs and caused death (lungs are precious for CDH kids because they barely had a 100% functioning one).
Okay, let's not chase the rabbit, last week, his Mickey button was faulty, the balloon had ruptured so he needed to change a new one, which was an experience he didn't like due to his trauma when young at hospital. I ordered a new one and it arrived 3 days later which was too fast for Jansen. He secretly wished the parcel disappeared into thin air. *(Dear Jansen, please know, this set ain't cheap)
It comes with manuals and a full set of feeding apparatus; the Mickey button, feeding tubes two types, gauze, syringe two types.
Usually, a lubricant is needed to ensure minimise collision while taking out the old one and also while inserting the new one. As usual, his look before changing (I had asked his permission whether can I blog about it, he said, yes please, and that he requested for prayer too because he said he was sooooo nervous).
The lubricant used must be water-based so I usually use this.
Sterile water for injecting into the feeding button and a balloon-like thingy will be there as a stopper from inside the stomach so that the feeding button will stay intact.
I wish I can show you a video but I usually was abit 20% nervous too, so I couldn't bring myself to make a video of it. Maybe next time.
It comes with size. Different people different sizes. For Jansen, he is using 12Fr (the diameter of the hole) and 1.7cm (the length of the shaft).
Usually, he needed a hug first and some talking or chit chat or just let him express his emotions and feeling, and during this time while he was being distracted expressing himself, I would calmly yet in a fast manner said, "I will take out now." and I will take it out when I said the word 'now' before Jansen got to entertain his another-level of his trauma fear (his hole almost close up once, and the doctor reluctant to put him back to operation theatre due to risk, so he used a chopstick-like steel thing in the clinic to poke, poke and poke till the hole open. Bleeding and in pain and wailing and being pinned down=trauma).
Usually, at this moment, Jansen would feel a sense of relief.
He asked me to take his photo without feeding button because he wanted to see how he looks like if without, to feel as though he is like us, no feeding tube. I was heart-broken for a moment when he made a remark "I look so weird with the hole there) but I didn't show him, I just encouraged him that one day when he graduates from tube-feeding, this hole will recover and there will be no more hole. He was glad again.
There was some puss due to I cover his button with gauze to prevent the faulty Mickey button from falling out accidentally. Covering up means less air circulation which would cause more accumulation of these stuff.
The red meat is what we call granulation tissue. The body is telling the brain that there is a wound to be healed so the body consistently building extra meat, wanting to cover up the hole. Some people get this tissue, some no. Jansen has it but it does not bother him, not it caused any pain.
I apologise first if the above photo makes you feel uncomfortable. That's not what I intend to do. But ya, please accept my apology.
I cleaned the surroundings first with sterile water and cotton pad before I put in the new one. For this step, the shaft of the new Mickey button needed to be lubricated to ensure smooth insertion into the stoma.
Then, he felt some discomfort, maybe some abrasion discomfort. But, still could give a thumb up.
Old button was rather yellowish due to the food etc. The balloon was already faulty.
Jansen prefers his stoma to be covered with a gauze because he got used to it since baby time. So, we change this dressing everyday.
This is the journey of Jansen, our CDH survivor. He already can eat from mouth, only that, he still faces some complications once every two weeks whereby his intestines will be stucked up or he said jam pain. And he cannot eat. So tube-feeding is needed during these few days of complications. I hope my sharing of changing his Mickey button doesn't cause you unnecessary yucky feeling. Sincerely sorry. Being a mother to Jansen, I give thanks for my ability to eat all the time. I realise to be able to eat happily and freely and to be able to go toilet for 'poo-ing' is a great blessing.
Hello there, I am the lady behind this little space of my blog in this awesome vast Hive blockchain. Often, when I blog, read, curate and get to know new people, I feel that I am no longer stucked inside the four-wall of my apartment, but rather, I am travelling all across the world, just like a little heaven-on-earth experience. Hope you enjoy reading this snippet of my life as I enjoy exploring yours. Thank you for swinging by.
