Need your help

[BlueandGold]

I just found out that another man about 12 miles down the road from me has ALS. He was diagnosed 18 months ago. Much older than me, 79, however he is bulbar. He got his feeding tube at the local community hospital, really not more than an urgent care. We live in a very rural setting and he lives on a farm. They gave neither him or family any instructions on the use, care or maintenance of his tube.

His son has been emailing me telling me that he constantly has is formula backing up in the tube. I thought maybe they might be feeding too frequent but found out his surgeon DID NOT PUT A CLAMP ON HIS PEG TUBE! I have never heard of a Peg Tube with no clamp.

Does anyone know if it is possible to get a clamp online that his son could put on the tube? I'm sure there are times that our clamps could break and surely they can be replaced without a brand new tube.

Feel so sorry for this gentleman. He lost his wife of 59 years in November and refuses to see any other doctors than those within a 15 mile radius, and believe me there are NO providers in this area who know anything about ALS. Any suggestions would be appreciated.

Vince

 

[affected]

If there were no clamp he would have acidic stomach contents everywhere all the time, seems odd to me Vince.

 

[BlueandGold]

That's exactly what his son told me was happening Tillie. Comes right up through the tube and into the syringe. It has the Y Attachment at the top with the little stopper where the syringe goes but they put no clamp on the tube.

 

[affected]

Any hardware store would have some kind of clamp they could start with until they find something better. Til they get to the store, remove the syringe and place the plunger back in it then attach the syringe. Incredible :evil:

 

[lgelb]

Vince, maybe if you can provide them w/ a pic of your clamp, that might help them get something as similar as poss at the store for the moment. And yes, not knowing his brand, I can see one sold online, the AMT brand, that supposedly fits all brands. They can search on feeding tube clamp order.

 

[Diane H]

I am confused! I have never had a clamp on any of my PEG tubes, just the little tab plug. If he is using his PEG for slow or continuous drip feeding, there should be a roller clamp on the extension tubing, not on the PEG itself. Any clamp will work though. The problem with the feeding backing up the tube does sound like feeding to fast or too much as you suggested. If he is fed sitting upright rather than reclined about 45 degrees, intra-abdominal pressure could be pushing it back. A clog in the PEG would also cause backup even if it wasn't completely clogged. A thorough check of tube placement is in order. If the tube is not in the stomach he would have severe pain with feedings though.

 

[BlueandGold]

Yes Diane, I was referring to the roller clamp on the tube itself. They don't have one. Laurie, I sent him a link to a site that says they have a universal clamp that will fit all Peg Tubes. Doesn't quite look like mine but it would be better than nothing. Not having that clamp on the tube does not allow you to control the flow rate and allows contents to back flow all the way up to the y attachment.

Thanks for the feedback everyone.

Vince

 

[BlueandGold]

Don't know if I can post this link but this is exactly what my clamp looks like. I sent it to him (his son that is).

Scienceware 182290000 Acetal Plastic Tubing Maxi Clamp (Pack of 6): Science Lab Test Tube Clamps: Amazon.com@AMEPARAM@@http://ecx.images-amazon.com/images/I/31lVsnEXjfL.@@AMEPARAM@@31lVsnEXjfL

Vince

 

[BlueandGold]

This is what mine looks like.



Sent the link to him. Just don't know how to attach it.

Vince

 

[gooseberry]

You could try a bag clip...like for potato chips or a binder clip

 

[affected]

Diane it's a regular peg that is first inserted, not a button, so the tube is permanently attached.

 

[gooseberry]

Steve had the option of a button initially but the couldnt get it placed properly so he had one with all the tubing and then got a button

 

[GregK]

One of old-fashioned, blue-steel paperclips should do the trick.