Too Full?

[Dizmom]

Pals has been on mainly tube feeds for at least 18 months. 2 cans a feeding 3 times a day. of Isosource About three weeks ago he was complaining to the nurse that he was always feeling bloated. Together we decided to go to 2 feeds of 2 cans. today the Hospice nurse was here and he again told her that he feels bloated every night when he goes to bed at 10pm. His last feeding was a 4. so now we have gone to only 1 can 2 times a day. So he is eating about 60% less then normal. He still has "some" use of his legs, by this I mean he can only pivot. upper body is almost completely gone. some limited core strength but he could never sit up himself. Now, the question. Is that enough to sustain him? It seems like he is not digesting too much cuz when we go to feed him at 4 which is 7 hours after the last feed, some formula still comes out the tube when we do the return. Have others seen this decrease in digestion and does it mean anything more than slow digestion?
He is now wearing bipap all day and it takes 20 min to get it on him cuz he is so picky about any leak at all. Should the mask be so tight it leaves marks on his face??

 

[Loverly]

I'm sorry to say that this is what happened to my PAL a few weeks before she passed. She just didn't want much and she wanted it administered much more slowly.

The respiratory therapist at the hospital did want her bipap to be tight. There are silicone shields you can buy to cushion the skin. We used small strips of flannel placed around the mask. The problem can come when the skin becomes injured and breaks down, so it's a good idea to put something between his skin and the mask, and he might find it a better fit.

As to how long he can go on with less food, only your doctor can tell you, but be patient and follow his lead because only he knows how he really feels (of course).
Good lUck.
jen

 

[affected]

It could be a sign the end is approaching, that he feels that way.

But cutting calories down by that amount is going to mean he is going to start wasting fairly fast now. PALS have very high calorie needs, so 2 cans a day is not going to come close.

If you are at peace with this, and your PALS is more comfortable, then just giving palliative measures now, loving him heaps, is the best thing you can do xxxx

 

[Ells]

Are his bowels working regularly?

 

[pittsburghgal]

My husband had the same bloating you describe after PEG feedings with residual formula in the stomach when starting the next feeding 5 hours later. He was switched to a higher calorie formula so we could reduce the volume from 8 cans a day to 6 cans. I also gave him a probiotic capsule through the PEG each day and the problem resolved.

Sharon

 

[Dizmom]

Ells, Yes, his bowels are working regularly. I think he is ok with the 2 cans, it was his idea. I will ask hospice about another type of formula. We also tried an ant-acid a couple hours before bed. this AM he said it didn't work.

He is obsessed with his mask. I am constantly adjusting it, and it feels like the straps are in the same place when we are done. Could he be having trouble with the settings? Should I call the doc? I know he really isn't having any leak because I feel around the mask. It is so tight that he has marks on his face. ?

 

[Nuts]

Have you tried a different mask? We rotate between two masks and nasal pillows. When one becomes a problem, I just switch to the next and we are good for a week or so.

 

[Dizmom]

We only have the one mask. Do you mean a new one or a different size one?