Meet BARD ~ Belly Button #2

Oh yes, I have been famous off late and my ee ee (aunty) has received numerous curious but polite emails on me. Many wonders how I eat and many are surprised at how good I look … but well of course (ahem!) and you haven’t even had a closeup view of my eye lashes and curly locks!
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Now, enough of my vanity. I’ll tell you how I’ve survived for 4 years 7 months without being able to close my mouth, suck, chew or swallow.
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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.
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And since I had really bad reflux, where the tube gets dislodged too, mommy places bandages around the tube, my nose and cheek to secure it which is eeky coz it leaves my skin red, itchy and patchy.
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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!
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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.
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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.
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Convinced it was the way to go forward, Mommy contacted medical companies for the BARD as it is not readily available in Malaysia. With Dr. Chiu of Hospital Kandang Kerbau (Singapore)’s help, we received this box via courier one day. We took a sneak peek of the contents and we all flipped and exclaimed: How are the contents going to fit into his/my little tummy?!? “Mommy, help! It’s going to hurt! I don’t want a BARD.”


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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.

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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!
To ensure I do not get granulation tissues (excessive flesh and skin growing) around my BARD, nana changes and clean my dressing numerous times a day and tapes it down with micropore or duoderm that is kinder to my skin.
With the BARD, not only do I get the necessary nutrients, supplements and proper intake of food, I have kissed the yucky suction machine goodbye. With the occassional mild reflux and much lesser secretions (oh, did I tell you I drool all the time? Its truly not intentional as I can’t swallow or close me mouth.), I hardly have fluid that needs to be sucked out of my naso passage and lungs. So, the picture below captures my official last suction session ~ as promised by Mommy.


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Surgery on 28 October 2003
@ Kandang Kerbau Children + Women Hospital, Singapore

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Please do not hesistate to write to my ee ee or Mommy (scrap-n-crop.blogspot.com) for more information, questions, support groups on my BARD or any special kids related issued.

vce)(written by ee ee in the voice of Bryant Chan)
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