Old 01-07-2017, 04:41 PM #1 (permalink)
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Default PALS with no energy

My PALS had a friend come over today. The friend wanted to take a ride in his jeep. My PALS didn't want to.

When he left, I asked why? He said I have no energy.

I am wondering if this is more likely from him not using the Trilogy or if it is from him changing over completely to tube feeds using Isosource 1.5 and Complete? He is getting his 2,000 calories that the nutritionist suggested and he isn't losing weight.
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Old 01-07-2017, 07:11 PM #2 (permalink)
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Default Re: PALS with no energy

Have you thought about trying Liquid Hope or supplement with some regular meals made in a Vitamix? Calories don't necessarily mean great nutrition. Although these meal substitutes contain a good mix of both micro and macro nutrients, sometimes real food just makes one feel better.
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Old 01-07-2017, 07:15 PM #3 (permalink)
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Default Re: PALS with no energy

I think they have good days and bad days. Steve has days where he had lots of energy and days where he doesn't. So do I as a matter of fact. Hopefully, oys just one of those days.
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Old 01-07-2017, 07:23 PM #4 (permalink)
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Default Re: PALS with no energy

I agree with the suggestion to try a closer-to-nature formula and/or blending "real food." Our bodies aren't made to subsist on most tube formulas, however well-fortified. How good would you feel on only one type of food all the time? The Trilogy is certainly another possible reason, assuming his breathing is not "normal" when not supported by the BiPAP.
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Old 01-07-2017, 07:33 PM #5 (permalink)
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Default Re: PALS with no energy

I was thinking the Complete was blended real food. He wanted something with more calories so we are trying the Isosource. He is tolerating both of them.

I'm not sure I can get him to do blended real food. He will be afraid he is going to clog his tube. Also, he is on his own 13 hrs a day during the week.
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Old 01-08-2017, 03:40 AM #6 (permalink)
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Default Re: PALS with no energy

Blend stuff in advance and put it in the refrigerator?
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Old 01-08-2017, 09:31 AM #7 (permalink)
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Default Re: PALS with no energy

Can you do a feed before work? You can make it very liquidy so it doesnt clog the tube. The key is a good blender. I crockpotted meat and vegetables for steve since it made everything so tender. You could do that and blend it up.
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Old 01-08-2017, 09:37 AM #8 (permalink)
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Default Re: PALS with no energy

Thanks for the suggestions! I will see what I can do.

He actually told me later in the day that he is now feeling short of breath... Mostly when he lays down. He says yesterday was the first day that he had no energy. I am wondering if it was just a bad day or if it is the breathing that is causing it? I gave him extra pillows to prop himself up with last night and he used his trilogy for the first hour in bed last night.

It's 8:36 am and he is napping already. Ugh! I feel like things have been speeding up recently.
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Old 01-08-2017, 01:39 PM #9 (permalink)
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Default Re: PALS with no energy

Does he have a hospital or adjustable bed? Being short of breath can certainly zap energy. Maybe if he starts using the Trilogy his energy will return or, at least, improve.
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Old 01-08-2017, 02:27 PM #10 (permalink)
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Default Re: PALS with no energy

He doesn't have either hospital or adjustable. I just added extra pillows last night. He said he has some energy today?! He used his Trilogy for about the first hour last night. I think he is planning to try every night. I just wish he wouldn't have waited until he was feeling short of breath.

You can lead them to water but you can't make them drink...
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Old 01-08-2017, 02:39 PM #11 (permalink)
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Default Re: PALS with no energy

If he needs the Trilogy, my shorthand is, he needs an adjustable/ hospital bed. Think about the tossing and turning and pillow shifting you do even as a healthy person on a flat bed. If a machine is pushing air into the passages that serve the lungs, the more accessible the end of those passages to air flow, the better. Would you be able to add air to a tire with the valve stem flat against the rim?
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Old 01-08-2017, 02:55 PM #12 (permalink)
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Default Re: PALS with no energy

Before Darcey was given a BiPAP, she was tired most of the time. She'd fall asleep mid-sentence during conversations. And she was losing 10+ pounds a month even though she was eating well. Night times were difficult... as she wasn't comfortable laying down and felt as if she was struggling to breathe. When she began to use the BiPAP at night, the weight loss stopped. Her Johns Hopkins neuro said "It is much like you're running a marathon at night. Your body is working overtime. Not so much to get oxygen in, but more so to get CO2 out." Life changed for the better when she began sleeping with the BiPAP.

Darcey was unable to appreciate the hospital bed until we added an alternating pressure air mattress. She no longer wakes through the night. I, however, move her about every 3 - 4 hours when I get up for my own potty run. This keeps her back from becoming painful upon waking in the morning. Sometimes she wakes enough to say "thank you" and sometimes she doesn't. We BOTH sleep well in between.

I hope you find that which works for the two of you! My best!

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Old 01-08-2017, 03:04 PM #13 (permalink)
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Default Re: PALS with no energy

I agree that a hospital bed would be helpful! He isn't going to be happy about it... I have had to bring several uncomfortable things up to him this week. I will add this to my list. UGH!
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