See the tube running into my nose? I’ve had one since I was 1-day old. It’s call a nasogastric (NG) tube. Mommy or daddy will put the tube through my nose and pass it down my throat to my tummy. This has to be done carefully and the timing has to be perfect; i.e. when I am inhaling … but often not and it hurts a lot.
My bad reflux caused me to be fed really slowly – 60ml of milk every 1-1/2 hours through a huge syringe that was placed on an automatic pump (like those they have in the oncology units of hospitals to administer medicine for cancer patients) coz daddy couldn’t find me a kangaroo pump. In between feeds they will rest my stomach for 30 minutes to allow the gastric juice to work (or there will be other problems) before the next 1-1/2 hours feeding takes place gain. Mommy, daddy, nana (grandma) and ee ee took shifts to feed me 24 hours 7 days a week for 1-1/2 years!
Although it was exhausting and distruptive to their careers, none of them complained or willingly gave in to fitting me with a gastrostomy tube (GT), which involves surgically inserting a tube into either my tummy or intestine. But as I grew bigger, I was not taking enough nutrients and supplements. My reflux deteriorated whereby I had more and more hospital visits and spent a good 50-60% of my time in the ICU followed by HDU wards for pneumonia and stomach infections, with the gastic juices hurting even my esofagus.
After spending countless of hours reserching, talking to families living with the GT and doctors – but more importantly facing the brutal truth that I had to go off the NG due to my reflux – Mommy, nana, ee ee and I visited my friend Jon in Singapore who had recently fitted a GT – BARD. Since Jon is really, really smart; and unlike me, Jon can hear, see, read and comprehend sentences, Jon was able to answer our “yes”-“no” questions on actually living with a BARD.
Little did we realised that all clever Dr. Chiu had to do was make five 1 centimetres wide insertions around my belly and place only the mushroom-shaped part in my tummy with the help of the endoscope. Dr. Chiu also wrapped bits of my stomach up permanently around my esofagus to prevent reflux as this ensure that nothing gets fed through or out of my esofagus into my stomach.
With my button in place and after much practice and guidance from forums, dietician visits and books, my nana now feeds me just about anything ~ fish, soya, vegetables, fruits, seeds, etc. About 9 to 12 different food types get blended in a special food blender for kids like me daily and gets prepared with my 3-hourly milk feed. The result is a microscopic fine thick liquid that gets passed through a large syringe, tube and into my BARD. Yes, it’s a process of literally pouring food into my tummy through a hole. As ee ee puts it to strangers: the concept is similar to the bottom of a piggy bank!