Mike, you might also ask about Caphosol (brand names are ok here, far as I know) which is a prescription oral rinse. For mouth sores I recommend viscous lidocaine, also a prescription. It was the only thing that worked for me.

All the other advice has been excellent. Keep up the good work, buddy - you're doing great!

Does anyone know how to clean the syringe for the feeding tube? I took mine apart, washed it in warm soapy water, and let it air dry, but when I put it back together it was very hard to operate. it seemed the rubber had no lubrication so I put a little olive oil on it and it seems to work but it is VERY easy to slide in and out, like as if the seal might not be to good. Any sugestions? Thanks

I don't use the plunge...with rubber. I just use the syringe without it by holding up my feeding tube, then pour in protein into the open syringe and let gravity takes its course. I use a water flush before, and after each feeding.

We use the plunger and I agree it is very hard to operate after it has been used once or twice. I take it apart and rinse it with water and leave to dry. Using a bit of oil to lubricate does work. Personally I get so fed up with these syringes, especially after the contents have hit my ceiling, that I now throw them away after using them 4 - 6 times. Fortunately our health system provides me 60 per month at no cost.
I get so frustrated with them I swear a lot.
Good luck.
Tammy

You should be getting supplies like syringes thru a medical supply company. Arent you getting prescription formula? This along with drain sponges and tape should be sent to you each month.

If not, try The Oley Foundation. They run a exchange program where you would be able to get both formula and syringes by only paying the S&H costs (I think about $16 per case).

You should be using a new syringe on a regular basis. Its necessary to help cut the risk of infection.

My husband only used the syringe when we were away from the house and it was time for nutrition or hydration. At home we used a bag, either by gravity or by pump at nioght when he slept. You might find this easier. He also used a steam humidfier at night right next to the bed. That helped ease some of that nasty mucus. Drink lots of water too. Hope that helps some.

Mike

The nasty little secret of syringes is that they are purposely designed to be not last more than 4 times regardless of how well you clean them or oil them. Heck some of my syringes come in sealed packs with "single use only" emblazoned on them. It's the material used in that black ring of sealer around the plunger that starts to cling tightly to the inner portion of the syringe tube, making them hard to plunge. That's why most american insurance companies as well as Medicare allow 30 syringes a month or roughly one a day.
On the Blenderized diet for Mothers of PEG children, this topic comes up often. One "solution" is to buy on the internet : "squirrel syringes" which are exactly what their name implies: special syringes used to feed baby squirrels. They use a much different material for the plunger seal,
But it's easier just to use a new one every day. Don't let the formula cake or harden, but rinse the syringe after each use with clean water. We used to use olive oil also but it got too tedious plus only lasted one use. Don't worry about the seal, as the syringe either works or it doesn't. If there were a problem with the seal, then your formula would be spurting up around the black ring and out onto you so it would be hard to miss.
Hope this helps
Charm