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mysticunicorn66

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What kind of changes do caregivers notice in nail beds to indicate breathing is compromised? Reason I ask is that when I ask sis if she is having problems breathing, she just tells me "sometimes".
 
what is a nail bed?
 
My daughter's nail beds practically disappeared. Noticed that they were diminishing about a year ago. In April of this year, the only one I could easily see was on her right thumb. (ALS started on her left side). Heard something about breathing and nail beds, but never from pulmonary doc.
 
If your O2 level is low your nails can have a bluish color. Nail beds are the skin under your nails.

AL.
 
Hm I have heard of nail bed's disappearing but only because the color in the nail gets darker and kind of 'takes over' it.

For instance, my nails since I have had breathing issues have almost constantly all been a deep purple...all the way from the inside of the finger to almost the very tip of the nail. I know this is an indicator of poor blood oxygen supply. ...ie. not enough oxygen is flowing in the blood to make it to supply the extremeties. Sometimes it get real bad and turns almost a tinge of blue purple when breathing is being an issue or I am really cold.

If it is always like it then there is not much to judge by. But obviously, if you see all of a sudden that your PALS hands are turning real white and or/ purple and blue on the nails you know there is an oxygen problem and you need to either put her on oxygen or have her take a couple deep slow breaths and see if it helps. If not, call the dr. Hope this helps!
 
Ok, I was having a "blond Moment": not to be insensitive but I thought you were talking about a real bed! duh! so sorry!
 
The reason I ask is that when I checked her hands, from about the middle knuckle to the end of her fingertips are pretty pale white compared to the rest of the finger and hand. Also, nail beds are almost white. I can press on the nail beds lightly and the color does change a small bit. I ask her if she is having trouble breathing and she will say yes. I ask if she wants either the BIPAP or the concentrator put on her, but she always tells me 'No'. Told her that if she is having problems that I could put this on her to help, but then she tells me that she is alright. So, either she is toughing this out and being her usual stubborn self or maybe she wants to go. She told me recently that she can't go on like this and just wants to die.
 
Barbie: LOL that is OK. Probably were wondering what kind of person I am to have her sleeping in a bed of nails. Actually, she would probably say that she would have a reason for hurting if she was sleeping on a bed of nails. That is OK, Barbie, not insensitive at all.

Just wasn't sure what color changes to expect. Of course sis also has cardiomyopathy, so that could be the reason for the color change in fingers coupled with diminished breathing. Her BP has been hovering on the low side. So low, that the hospice nurse was going to contact her dr about lowering her blood pressure med (on it because of the cardiomyopathy to take some of the load off her heart due to that problem).
 
What is it that our PALS hate about that Bipap machine? I would think that being told "you will feel SO MUCH BETTER just having it on" and "you will sleep SO MUCH BETTER once you get used to it" would be enough to convince them to give it a fair try....stubborn is right! haha!
 
I wonder if it would do us CALS any harm to try out the Bipap. Maybe there is something scary about it. My understanding is that it helps you breathe in, and it helps you breathe out. If unconscious and/or unable to breathe at all by ourselves, this would be much comfort, but I can imagine that if there is any inclination at all to breathe on our own, having something do it for us, or something forcing breathing to happen would feel much like suffocation only in reverse. SCUBA diving to me is a little frightening because you are required to have constant air movement especially when ascending and descending to prevent your lungs from exploding. It is unnatural to breathe under water and I do get a sense of suffocation -- frightening. Hmmmmmmm........
I am going to ask to try it so that I understand what Tom is experiencing as best I can.
 
Nail beds was a new one for me too, Barbie I was confused too..lol
 
@Mrs C: She says the BIPAP makes her breathe deeper that she is used to even before ALS reared its ugly head. They have it set at 12/5. I need to check with the hospice nurse to see if someone can maybe recalibrate it to a setting that would be more comfortable to her.
 
Good idea. Breathing naturally is easy, breathing with equipment I sense requires a lot of trust. Trust the equipment won't fail, trust the air is good air, trust the equipment won't expand your lungs too much, WOW! As for nail beds - I knew what was up, but I have researched before. More with nail ridges, nail dimples , white spots, nail fungus etc. I wonder why a nail bed would completely disappear? This is a very intriguing topic, I am going to have to google all of this.......
 
When they told me Jason had a mere hours, his nail beds were blue to purplish in color. His face was ashen (pale-tanish), and his lips were blue. She tried to get pulses at various points on his legs and listened to lungs and heart... she couldn't find his pulse it was soo inaudible and soft. His BP was 110/54. He lived for 2.5 more days.

Not sure if this helps, but I hope so.
 
Thanks, Becca. yes, it does help. Sis's BP has been really low. She's pale now, but no bluish or purple color yet anywhere. I check her feet and hands often for signs as well. Not eating and drinking much either. Stupid pressure sore on bottom still there (hopefully we can get that fixed). I have been rotating her to her sides as much as I can, not the every two hours though that they recommend though since I have to work. Dad rolls her enough to get some pressure off her, but can manage to get her off of it completely, but I guess every little bit helps.

Thanks for all your help. Helps to know that one has somewhere to turn for some answers. Praying for you Becca, and your children and family.
 
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