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  1. JohnHMich

    Stopping by to say hi!

    It's been awhile with its ups and downs. I hope everyone is doing well in spite of the challenges. All the best, John
  2. JohnHMich

    Angela Barber

    My wife, friend, and companion of three decades, Angela, died this morning freeing her from the suffering and indignities of ALS. Thank you all for your years of patience and wise counsel.
  3. JohnHMich

    Kia Soul wheelchair conversion

    My wife is to the point where she cannot travel in the car. 2019 Kia Soul wheelchair conversion with rear manual ramp, auto retracting tyedowns Asking Price: 20,000 Mileage: 54,000 Exterior color: Grey Interior: Grey Contact: 734 9970404 Ann Arbor, MI
  4. JohnHMich

    Orange mucus from cough assist? To high a pressure?

    We are doing the anomalous symptom of the day lately. Today there was a cough assist useage that brought up bloody and orange mucus. We have been having trouble with secretions and have been trying different controls to limit and thin them. The nurse doesn't think its pneumonia. There was a...
  5. JohnHMich

    Signs of general decline...

    It has been awhile since I have provided an update. We are starting to have issues with intake again. We have reduced her food and water to avoid problems with nausea, stomach pain and large differences between intake and output. Her skin issues are spreading around. Cyanosis in her toes and...
  6. JohnHMich

    Morphine and grogginess

    We finally got ou act together after the last ALS clinic visit and hospice startup. Things are going pretty well. She is still getting fluids and Kate Farms thru the gtube. The BM problems have subsided. Most recently, we did a morphine test because she has a family history of not tolerating...
  7. JohnHMich

    Oximeter readings and sip & puff

    It is clear that my PALS blood oxygen level is starting to drop. I have been getting readings around 92 the last week or so. It is commonly right before her nap and again near bedtime. She has been using her Trilogy for naps for awhile. She has started using her sip & puff tube in the...
  8. JohnHMich

    When is it time for hospice

    We are at the point where all lifts use the Hoyer, 90% of food and all the meds are thru the gtube, she can’t operate her chair, write a check, turn pages on a paperback, or hold herself upright. I expect she will lose the ability to speak in weeks. She has a DNR and doesn’t want a trach. I...
  9. JohnHMich

    Hydration, nutrition and bowel/urinary incontinence

    I find myself trying to balance getting the nutrition and water requirements satisfied, while dealing with my wife's bowel incontinence by myself. The Hoyer doesn't help because I can't get the brief off. I have a shower chair that mostly works to get her briefs off, but it is a struggle...
  10. JohnHMich

    Coughed up a pill????

    Today we had a new wrinkle. We generally do evening pills and then the cough assist box. Tonight she coughed or vomited up one of the pills she had swallowed earlier. I don't know whether it had not gone fully into the stomach. Has anybody had a similar experience where the cough box seemed...
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