Tube-feed journey: The worst nightmare

During tube-feeding yesterday morning, we heard a gentle "thud" then stared in disbelief. "Oh my, Jansen's feeding button has dropped out!!!"

"Where? Where? No more button at my stomach hole!"

It dropped on the chair when he was standing up (I relocated it to the table on a piece of handkerchief)

These are two old feeding buttons that I kept eventhough the balloon is faulty (leak). Picture is to show how we inflate the balloon with water. Meaning, 1st you insert the button into stomach hole, then inflate the balloon to secure it at the stomach

The incident of feeding button dropped out is a great phobia to us all especially to Jansen due to bad experience when he was 6 months old. That time the button became faulty and dropped out, leaving his parents puzzled and strucked by fear because back then we didn't know what to do. We took one hour to reach hospital and another one hour to wait for available surgeon. Long waiting time caused the hole to almost close up! But they didn't think he needed another surgery at operation theatre so they pinned him down, and use a stainless steel long thingy to poke the hole hoping to enlarge it. Of course Jansen was crying and wailing in pain for help but we couldn't do anything. We just hope it would be a successful attempt as we also didn't prefer another surgery. Blood oozing out from the hole and about half an hour later, it was done! PHEW!!!

Yesterday's incident weren't that bad because the hole was still intact. Just that due to phobia (or perhaps some trauma) Jansen was crying while trying to push away my hand. I told Jansen to calm down while I use one metal chopstick to keep the hole open. Then I cried out for help from my husband to calm down Jansen while holding his hands because I wanted to insert the button ASAP, fearing the hole might close up (my part of phobia). It took few minutes and finally the button went in!

Expensive Mickey-Button set (come with feeding tubes), which we had bought alot of sets since 2014. One button can last us 3-6months. If we were not so lucky, the button's balloon gave way earlier. We used to joke that Jansen wears the most expensive 'earrings' in the world.

Better stick the button there with dressing plaster while we buy and wait for a new set of Mickey Button to arrive. As usual, he is still happy boy after that.

We still have a long journey to go before we wave bye-bye to feeding tubes and feeding button. Meanwhile, Jansen is learning how to eat and we will need all the positive vibes, faith, hope & love for Jansen. Thank you for reading my blog about Jansen 💞

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Feel free to check out my post on introduceyourself if you miss it out as you can read more details about what actually happened to Jansen.