Tracheotomy after pneumonia

Wendyjg0825

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My sister who lives in Germany and was diagnosed with ALS in 2019 has been in the hospital since last week for pneumonia and a really bad urinary tract infection.After three days they put her in a medically induced coma because she kept feeling like she was choking and her oxygen levels were low.They were supposed to be waking her up slowly today after doing a tracheotomy two days ago.I cannot get any information from the doctors at all because her friend who has the power of attorney made sure that she’s the only one that gets information.She thinks that she should be fine to go home by herself with nurses coming three times a day and the occasional visitor.My sister fell multiple times and can’t use her hands any more and has told me that she can’t walk very good at all.I am trying to explain to her friend that I don’t think she will “just fine” on her own anymore!I am flying there in April.But I’m not sure what to expect!
 

lgelb

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I'm very sorry about your sister, Wendy. If she will be relying on the machine attached to the tracheotomy for her breathing, then someone would need to be with her constantly in case of any issue or malfunction. If the tracheotomy was only for short-term use, and she will be returning to BiPAP using a mask, then that would be a different case, but, still with your sister not having use of her hands, it is hard to see her being safe and comfortable on her own. How have things been managed to this point?

Best,
Laurie
 

Wendyjg0825

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She has had nurses coming three times a day and her friends come to see her but nobody’s there all day.I have told her friend numerous times that I think it’s safer for her to be in a nursing home but she won’t budge.
 

GXTrex

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@lgelb Laurie,
If a PALS is using a Bipap mask, do they not need someone with them 24/7?
 

Nikki J

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Not necessarily. If one is not completely dependent on the respiratory support ( can breathe unassisted even if it is not optimal) and /or can fix any issues that arise ( not likely but possible depending on order of progression) then they will not need 24/7 for the bipap. People on invasive vents are almost always fully dependent respiratory and would die if the vent got disconnected. Mucus plugs are more common too when trached and need to be dealt with immediately.
 

GXTrex

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When a PALS is on 24/7 BIPAP, are they still able to breathe on their own usually? When they cant breathe at all on their own is that when they transition to invasive vents?
 

lgelb

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Yes to both. A BiPAP provides respiratory support for each breath and in ALS is usually set to provide a "backup rate" where it tries to prompt a breath (push air in) if breathing is too slow. But when it's doing this through a mask, the PALS may become too weak to make use of the new air. For them to survive past that point, they would need "invasive ventilation," where the air comes in through an opening in the trachea, so the person doesn't have to actually move it themselves with muscles.
 

GXTrex

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If a trache requires no breathing muscles, what would cause them to pass at this point? Thanks for helping me understand
 

Nikki J

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Infection, other perils of immobility , unrelated diseases,
 

GXTrex

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@Nikki J
Ok I see at that point it wouldnt be a breathing weakness issue. Thanks
 

nona

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I'm sure it's hard to get a good read on your sister's care from so far away, but I think your instincts are spot on. If she is trached then she cannot be alone. If she is not, then she may be OK until you are there in person and can reassess. I have lived alone through most of the disease, including now, but someone is here for most of my waking hours.
 

Wendyjg0825

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She never had a bipap mask.She has been breathing on her own and she has a suctioning machine.I had to convince her doctor to try a medicine like Guaifenisin to at least thin out the mucus back in November.They still have not woke her up.The doctors mentioned that she’s producing a lot of mucus so they were waiting until last Saturday but nobody gets a call or an update on the weekend so I know nothing now.
 

Wendyjg0825

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My sister is now in an intensive care nursing home and can’t walk,talk or breathe without oxygen anymore.I got here April and her friend who has the power of attorney(my sister lives in Germany)was telling me in the beginning that she would be able to come home which I was pretty sure wouldn’t be good for her.She has been telling her that they are fixing up her place and taking care of her beloved(yet very evil)cat.Now I have to be the one to tell her that she is cleaning out her house and the cat has been taken to an animal rescue group and the lease on her house is being terminated by the end of this month.I am driving over 250 miles every other day to see her,helping to go through her belongings while trying to make sure that I don’t slip and mention anything to her and dealing with this “friend” of hers telling me on a daily basis how hard it is for her while she’s selling her belongings.But now I need to figure out how to tell her that she won’t be coming home and that Malik is gone.I asked the nurse if she had any suggestions as to how tell her the best way possible but she said that I can do it!Does anyone have any suggestions?This is just so much to handle!!!
 

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lgelb

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I am very sorry to hear all this. I don't think anything but the truth is an option. The longer she thinks she is coming home the harder it will be for her to hear that she is not.

But I would try to plan and discuss activities that you will be able to do with her still. I don't know if it would be possible for the rescue group to bring her cat for visits until s/he is adopted or for someone to bring another cat in later on? If someone is willing to take her places, that should still be possible as well. I would try to set up everything in her room now, so she can watch livestreams on line -- animals, museums, whatever she likes, listen to music, etc., and whatever else you can do to salvage some of her things so it can be more truly her home.

A trach is not a death sentence, but if everyone treats her as if she is dying, that will surely hurry it along. I would try to understand what her goals are, think about what she enjoys, and support however such things can fit into her life. If she decides life is not worth living under these circumstances, that is her free choice as well, but at least you can offer your help in making a life at the facility if she would like that.

Best,
Laurie
 

Wendyjg0825

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The nursing home she is at now is two hours away from her house.They won’t bring her cat by to see her.I have been trying to see if they would send her pictures and/or videos of him but haven’t heard back yet.She doesn’t want to see pictures of her dogs now at all and just motions me to turn off the phone.She really doesn’t want to do anything at all.I asked if she would like to go outside in her chair and we could go for a walk but she doesn’t want to leave the room at all and the staff told me that we couldn’t go outside unless one of them goes with us.I know she is very frustrated because her speech computer is yet to get there and it’s so hard for her to get anything across.She’s not even watching the same shows that she used to watch at home at all anymore.Also,she used to have her house very warm all the time but now in the nursing home she wants the windows open all the time.I feel like she has given up and I try to cheer her up every time I come to see her but it’s not working!I am here until May 19 but then I have to go back to America and her friend keeps telling me that she thinks that my sister will completely shut down when I leave!
 
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