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Atsugi

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Jan 11, 2011
Messages
5,921
Reason
Lost a loved one
Diagnosis
12/2010
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US
State
FL
City
Orlando
PALS on home hospice crisis care 24/7, rapidly declining.
She's been a family practice physician for 22 years.
Diagnosed by EMG/NCV 8 months ago.
Now quad paralyzed, very little capacity to chew or swallow.
Speech unintelligible due to low lung capacity and reduced ability to form words.

Just now complained of lungs burning, legs heavy, headache in front.
BP 164/96 Pulse 126 Temp 98.6
Mouth breathing despite 4 liters in nasal cannula.
Nurse in home is an administrator, not confident or knowledgeable.

Hospice triage nurse said to give .5 mg Atavan and .5 mg morphine.

All comments appreciated.

-- Mike, husband caregiver
 
Oh Mike! Things don't sound very good. I'm so sorry you are going through this. ALS sucks!
I can't imagine how Krissy is feeling- as a doctor she must know, ya know?
As strong and manly as you are I recommend you cry for her, in front of her. I don't know why- just think you need to do that. Praying for peace.
 
Her lungs are filling, its most likely because of pneumonia. Hospice I thought usually provides Levsin for that, however it does decrease blood sugar.
What is her pulse ox? I am guessing her sats are way down is why her legs feel heavy, partly because of low O2 and partly the desease too.
They will continue to increase the morphine all along Mike. As long as she is experiencing any discomfort they will provide it until she appears to be comfortable. Your wife is a doctor she knows exactly what is occurring, ask her if she wants more moriphine or if she wants help breathing.

Dianna
 
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Hi Mike

Sorry to hear about this.

I know you are desperate for answers which is probably why you triple posted this thread.

I hope you don't mind that I merged your threads. It is my experience that you will get the best answer where members can build on past responses instead of getting piecemeal responses under separate threads.

I hope you get the help you need fast.

Good luck

Richard
 
Hi Richard, thanks for introducing yourself.

I was kinda hoping to get a medical doctor's opinion (non-binding of course). Also hoping to get different viewpoints from caregivers, from PALS, and from professionals.
 
burning in the lungs is usually a sign of pneumonia. this happens to my pals every time he has it. her blood pressure is high and so is her pulse. i dont know if she has any other health issues- if not, this most likely signifies being either in pain or uncomfortable or having anxiety. so the ativan may help. she may need more morphine as well.
if she is bed-bound, this could be why she has pneumonia. I assume she cant cough, much if any, so when laying for a period of time occurs, it causes pneumonia in our PALS. obviously not the only way one gets it, but could explain your guys situation.
I really hope this helped.
 
Hey Mike

I hope you are getting the help you need.

FYI the Healthcare professionals section is a bit of a dead area and I guarantee that any members with a healthcare background will check this section first. Furthermore most CALS frequent this section as often as the caregiver section.

In any event there are redirects in these sections.

Again, you'll get the best support by posting your question once in an appropriate area.

Take care

Richard
 
Thinking of you & the family. Hugs
 
headache is most likely due to CO2 build up and dehydration.
 
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