feeding

  1. T

    Getting Help, Caregivers

    We have a mix of ways that we have help. I thought I'd share them. I'd also be interested in hearing your ideas. For reference, my Dad is mostly immobile now, (diagnosed the end of 2018.) All transfers are with a Hoyer lift. He does get transferred to a commode or his PWC, (mostly if we're...
  2. I

    Minor bleeding at tube site. Normal?

    I had my feeding tube put in in April of last year. My ALS is bulbar and I no longer can take anything by mouth. Several weeks ago I noticed that there was blood at the opening. It is not a lot, but there appears to be a little blister or skin tab protruding from the opening. I am now...
  3. T

    So much air!

    My Dad got his tube in early December. We've tried both gravity and now pump feeding. He is just not comfortable. He can't get down more than 3 cans a day without being miserable. We've tried the first 1.5 calorie formula, a higher 2.0 calorie formula, and a 1.5 with lower fiber. We are...
  4. N

    cold or flu with ALS is terrible!

    this is the second time this year I've been down and out. The worst part is the breathing is extremely strained. that is nothing new and I have never used bipap or trilogy. I'm getting antibiotics tonight and so far my regimen is Musinex, breathing treatments with the mask and smoke stuff...
  5. Chincoteaguer

    Sleeping and tube feeding

    Sibyl has been sleeping a lot these past few days and definetly losing her concentration - she picks up her white board and magic marker and then just lays them on her stomach, etc. I have been letting her sleep thru her feeding times and when she does wake up she will only let me feed her...
  6. B

    Unconscious after oxygen drop?

    My sister (diagnosed 7 years ago, bedridden, tube fed, ventilated, communication system) had an oxygen drop a couple of days ago. Doctors said there may have been irreversible damage. She has not responded to stimulation since. The fever has gone down just today. Her medical care directive...
  7. Chincoteaguer

    Back home from hospital

    I apologize for the length of this post but I hope it might help others who have to take their PALS to the ER. We were in the hospital from Thursday morning until noon on Saturday. As I have posted previously the trip to the ER was recommended by our health care nurse based on a false oxygen...
  8. P

    support for children and grandchildren of PALS

    I was personally very grateful to see a camp offerred to the minor children and grandchildren of PALS. As a CALS I was overwhelmed with gratitude when I saw the notice. Just wonderful, I thought, I wept and sent the notice on to my daughters in law who might want to participate with our...
  9. B

    Constant use of Bipap machine

    Hi Everyone, Haven’t posted in about a year. My father was diagnosed approx 18 months ago with ALS and he is in the final stages. He has trouble holding up his head, can barely walk on his own, not eating anymore on his own and getting all his nutrients from a feeding tube. Just this week his...
  10. A

    Nuedexta and radicava

    My mother found out that she’ll be able to start radicava soon and Medicare is going to cover the entire cost! She also had a feeding tube put in last week at Mass General and it went well. She can still eat relatively normally but gets tired after a while and has lost a little weight. She...
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