Decision about tracheostomy

[patoyeah]

https://webportal.aanem.org/Resources/Files/Downloads/products/13CD.pdf

 

[affected]

Pat it's not true about non-invasive ventilation. PALS die of respiratory failure with their bipap attached and turned on. That is why PALS move from non-invasive to invasive if they make that decision.

A trach alone is sometimes done to manage secretion issues, but that's different to a trach and vent to breathe. Hope that makes sense?

 

[patoyeah]

Thanks Tillie. I have to research more.

PDFs are tough for me to use with this eye gaze, do not know if i can copy specific sections with this. If i can / could, i will pull quotes for those 3 papers i just posted. I will try, or try to find a paper / file, i can copy sections.

In these papers it states that pals can use niv ( i believe they may be using a volume driven ventilator, not a bpap, with niv ) indefinitely, depending on severity of bublar involvement and Glottic function. These papers seem to say that requirement for a trache is dependent on Glottic function, and not respiratory musculature. From what i read in those 3 papers i posted a high % ( 70's, i think ) of pals meet these requirements and can remain on niv. If I can copy specific sections, i will, but have not been able to yet w/pdf files.

I will try to find out, i think from those papers 3 things determine trache necessity, glottic function, severe bulbar issues, and a cough producing 160L/min or more, and if i understand those papers correctly, most pals meet these requirements.

If i am wrong, i am sorry. It seems like this may not be the status quo for traches and pals.

 

[patoyeah]

Sorry this paper is difficult to manipulate w/eye gaze, but might be useful:



?Alternatives to Endotracheal Intubation for Patients with Neuromuscular Diseases

 

[affected]

Thanks Pat, but that seemed to be talking (I didn't have time to read it right through I'm sorry) about acute respiratory failure - an emergency situation and the treatment by whacking a trach in to save someone.

I've known many PALS who have passed away with their bipap hooked up and running.

Thanks for providing the link!

 

[shepherdnurse]

I had a friend who had a tracheostomy. In fact, it was her son that had the tracheostomy. When he was a baby, her son had to go through some surgeries and therefore that had to be performed by the doctor. He was unable to talk, but with time he could learn how to talk. I believe that tracheostomy saved his life and I am thankful for that.

 

[patoyeah]

How u doing Alex?

Evening,

Pat

 

[shepherdnurse]

I can remember in nursing school how to do trachs and having to put them in the patient. I also learned how to CPR for a client who had a tracheotomy. It was a difficult skill to learn, but I am glad that I managed to do it because it is necessary to learn it in order to save someone's life. I am so thankful that I have learned those skills because I know that it will save a life someday.

 

[Purplespider]

That is a very hard decision and the decision must be done carefully. I can remember learning about that procedure. We learned how to clean it and if we had to do CPR on a victim who had the tracheostomy. I would say that the thing that would help me to decide about this particular procedure is if it was going to keep me alive. If I or my family thought that it would keep me alive, then I would definitely do the tracheostomy. Keeping people alive is the deciding factor I believe.

 

[affected]

purplespider would you please post an introduction in a new thread?
Your profile indicates you do not have ALS, so you should let us know what brings you here and into discussions. thanks a lot

 

[Dave K]

they said that the average survival after the trach is 4 months . . .

This is a question that different doctors will answer differently. My PALS also has copious secretions and got the trach as a comfort measure so she could be suctioned. The fact that a doctor estimated her life expectancy to be less than 12 months after the operation qualified her for hospice care with the trach. This is very significant, because once a patient qualifies for hospice, there are no coverage limits on the frequency or duration of home nursing and home health aide visits, other than that they must be medically necessary for symptom palliation.

How is my life going to be after the trach? If I'll have to spend my time getting suctioned and struggling to stay alive, it may not be worth it.

My wife sometimes gets very depressed, but most days she smiles a lot and recently attended our daughter's wedding. I think it helps to have the right equipment and sufficient help at home.

Not to mention that I would have to live in some nursing home as I can't afford 24/7 care at home.

You may be entitled to significantly more help at home than you have been informed by your health plan. Since you are in Los Angeles, I encourage you to contact Pamela Pressley of Consumer Watchdog, which is now actively working to help ALS patients get better levels of home care. Her phone number is 310-392-0522, ext. 307. Her email is [email protected]

If you are skeptical about having a right to more care at home than you are being told, please look at these government rulings requiring health plans to provide as many as 16 hours per day of home nursing to ALS patients with tracheostomies:

https://www.dropbox.com/l/scl/AAAojY2mcQbhagiuHuHVJulhl9bmgUuSnRY

 

[patoyeah]

Dave do u know if your wifes secretions were mostly mucus, or saliva?

Are u happy with the trache, did it help?

how many hours per day do u receive help that can care for the trache, through Hospice?

Thanks,

Pat

 

[gooseberry]

At the VA, Steve's pulmo said he was a good candidate since he didnt have secrwtion issues. He stated it was more difficult to care for the pals if you had to be suctioning frequently. He was a big believer in the trilogy, being used properly, basically negating the need for a trache. We didnt get to this point but it is just another perspective.

 

[Diane H]

As a person with very slowly progressive ALS and 12 years with a trach and vent, I want to say that life on a vent is a great improvement over wondering if the next bout of congestion would be the one I wouldn't survive. Trach care is a soap and water wash and a gauze square once a day. Suctioning is painless and anyone can do it with 10 minutes of watch one, do one. Suctioning takes only a couple of minutes, but frequency varies person to person and day to day. You can't be left alone with being able to get assistance in 2 or 3 minutes, but you don't need someone next to you. If you can still talk and/or swallow before being trached, you will be able to after. A trach and vent is not for everyone but as someone with slow progression and a husband who has stood by me in spite of minimal help with caregiving, life is good. Not great, but definitely good.

 

[texastc]

You are awesome Diane!! Fantastic outlook and attitude. Glad for you, life is good.

tc