What is it?
Trachys are plastic tubes inserted into the neck through a hole in the throat to provide oxygen directly to the lungs, rather than breathing as normally through mouth and nose.
Why have it?
Mostly, because there is some problem in the airway between mouth/nose and lungs. This isn't the boy's reason. His is because he doesn't swallow properly. Therefore there is a risk that his saliva or food will end up in his lungs (aspiration) rather than in his tummy. The trachy helps stop this happening.
Are they all the same?
No. There are lots of different types. There are standard trachys which just have the tube and nothing else. Then there are cuffed trachys. These have an extra bit round the tube to block any air (or anything else) getting past the tube. There are a range of types of used in different situations. There are foam cuffs which form permanent blockages of the throat. There are air or water cuffs which can be inflated and deflated according to need from a little bulb on the outside of the tube. The boy has a water cuff trachy. A cuffed trachy means that no air is getting past the voicebox, so that means no speech.
What about trachy care?
The water cuff has to be deflated and reinflated every twelve hours. He hates having it done. When the cuff is deflated anything sitting above the cuff has nowhere to go but down into the lungs. This makes him cough and choke until it is suctioned out.
Suctioning is a major part of trachy care. Catheters are used. These are thin flexible plastic tubes which are put into the trachy tube to suck out secretions. The trachy interferes with the body's normal way of clearing the lungs, so the catheters help it out. You have to careful to use the right size for the tube and to only put the catheter in as far as the bottom of the tube. Any further and you can irritate or damage the windpipe.
The trachy is held in place with ties and a dressing to stop the trachy rubbing on the skin. The ties go through little loops on either side of the trachy and round the neck. Some people use velcro ties. But because the boys was only 16 months when he had his fitted he would soon have figured how to undo the velcro. Instead, we have fabric ties which are knotted in place.
The ties have to be changed everyday. A two person procedure. One to cut the ties and replace them and the dressing. One to hold the trachy in place while it's being done.
How often does the trachy tube have to be changed?
This seems to vary depending on the tube. But the boy's has to be changed monthly. We do this at home. The hospital taught us to do it. Not a pleasant experience but they wouldn't have let us go home unless we'd done it.
Do they ever fall out?
Apparently yes. It's never happened to us but we are unusual. The boy is pretty careful with his and only twice has he tried to pull it out. Both times when in a rage.
Yes. He has to have an emergency box with him at all times. This has spare trachy (in case the one he has block), a smaller trachy (in case his normal size won't go back in), spare dressing, tapes and ties and scissors to cut the tapes plus a syringe to deflate the cuff. And he has to have portable suction equipment and catheters. There is no such thing as a simple trip outdoors for him.
Disclaimer: for proper info about trachys talk to a doctor. Don't just take advice from the Internet.