Question about when to get Tracheotomy

[Isaiah535]

I am in no way making this decision for my husband. He is the one who is more comfortable with it. I'm asking these questions so I can get on the same page as him. The " 24/7 care" is what has been scaring me away from the idea. But I appreciate your comments about the time constraint and details of what it actually takes. I am with my husband 24/7 anyways. I take fu care of him all by my self. The only time I have to be away is maybe for an hour to go grocery shopping which is not so much an option anymore with him not being able to go to the restroom by himself and with all the coughing and drooling. So I guess one more thing to clean and take care of wouldn't make a difference. You said it would need to be cleaned out once a day? I do that for his feeding tube hole anyways. And how offten suctioned. I already do his mouth once or twice a day. Just trying to get an idea what it's really like.

 

[GilWest]

I am in no way making this decision for my husband. He is the one who is more comfortable with it. I'm asking these questions so I can get on the same page as him. The " 24/7 care" is what has been scaring me away from the idea. But I appreciate your comments about the time constraint and details of what it actually takes. I am with my husband 24/7 anyways. I take fu care of him all by my self. The only time I have to be away is maybe for an hour to go grocery shopping which is not so much an option anymore with him not being able to go to the restroom by himself and with all the coughing and drooling. So I guess one more thing to clean and take care of wouldn't make a difference. You said it would need to be cleaned out once a day? I do that for his feeding tube hole anyways. And how offten suctioned. I already do his mouth once or twice a day. Just trying to get an idea what it's really like.

At first, the Trach causes more secretions and coughing. Others may be different, but Mom's really straightened out after about 3-4 weeks. I may suction her on average 3-4 times a day. Sometimes more. Our Trach care consists of changing out a 4x4 piece of split gauze sponge cleaning around the stoma (hole) with sterile water or peroxide, suctioning, and switching out the inner cannula. I then clean the used cannula with paroxide and store it for the next day. I would urge you to please consider progression and quality of life when considering a vent.

 

[nebrhahe53]

I think someone always has to be present. I have heard stories of people suffocating because their tube came out, they couldnt call for help, and no one was there. Not a pleasant way to die, of course what is with this dammed disease.

 

[Barbie]

Graybeard my husband also uses Dasher and really can type fast. he uses it with a Smart Nav which bounces off a reflective dot on his baseball cap.

 

[GilWest]

I think someone always has to be present. I have heard stories of people suffocating because their tube came out, they couldnt call for help, and no one was there. Not a pleasant way to die, of course what is with this dammed disease.

Yes, they do, but the caregiver does not have to hover. I go outside with a baby monitor. The ventilator will alarm if there is a problem. It will wake you up, also. You get used to it and adjust. My life is alarms. Kangaroo pump has its sound, as does the wound vac and oximetry. It is in no way constant, just a little tiring not being able to run out for a quick bite or errand. Actually the vent alarm is the only one I might get moderately in a hurry for, and that is if it alarms at an unusual time. I can tell by the way mom is breathing if I am going to get a high resp. Rate alarm. The low leak alarm means the whisper swivel has some mucus in it. The low respiration rate alarm means that mom is probably coughing. You can hear the change in air flow when it is a circuit disconnect. We did have one mucus plug one time, but it was easily cleared with the ambu bag, saline, suctioning, and an inner cannula change.