The boy has a gastrostomy. I'm no doctor, but this is our experience of one.
What is it?
A gastrostomy is a surgical opening through the tummy wall into the stomach. A feeding device is inserted through this opening into the stomach. This allows the boy to be fed directly into his stomach, bypassing the mouth and throat.
Why have it?
People who have difficulties feeding can have a gastrostomy. There are a number of reasons why someone might have difficulties feeding. But the boy's reason is that he has no swallow, which increases the chance that food will go into his lungs (aspiration) rather than his tummy.
Are they all the same?
No. There are lots of different types. The boy has a Percutaneous Endoscope Gastrostomy or PEG. Bascially, this is a plastic tube which comes out of a cut (stoma) in his tummy. Inside it is held in place by a plastic disk. Outside, there is a triangular piece of plastic with a clip to encourage it to lie flat and to stop it going back in the tummy. And it has a small plastic clamp to stop stomach contents dribbling out. It is supposed to last for about 18 months but the boy's had his for two years.
Anything special about the boy's?
But of course. Nothing's strightforward for him. They were worried about vomiting during chemo. So, to reduce the risk he had a large tube (for his size) inserted. That meant that they could then insert another smaller tube into the PEG which goes through his stomach and into the intestines (jejunostomy). Inserting the second tube is a fiddly process involving guided radiography - like a permanent x-ray allowing the operator watch a screen showing his tummy whilst feeding the tube in, to check that the second tube was going out of the stomach and not coiling up inside.
The end of the tube then has a special Y-shaped adaptor to separate out access to both tubes. He gets all his feed and medicines this way, including oral chemo.
What about gastro care?
It's pretty simple to care for. Plain soap and water most of the time. And washing the tube and where it goes into his tummy is part of his normal bathtime routine.
To get feed or medicines through the gastro tube can be done using a syringe or pump. Apart from usual clean hands procedures, there's nothing in particular to do. But the jejunostomy is a different matter. As everything put through it bypasses the stomach any bacteria or whatever doesn't get dealt with by the body. So every access needs hands to be thoroughly washed, the access port to be cleaned with an anti-bacterial wipe and sterile syringes or feeding sets.
Disclaimer: for proper info about gastros talk to a doctor. Don't just take advice from the Internet.