Bulbar & tracheostomy (Endotracheostomy)...

Status
Not open for further replies.

carex

Active member
Joined
Mar 12, 2016
Messages
48
Reason
PALS
Diagnosis
10/2015
Country
Us
State
FL
I'm planning an operation or insertion in January.

I understand the basic dynamics of both. However, is there anybody on the forum that has experience with a heavy mucus flow during the use of said device(s). My concern is that the 'baloon' is far enough down the trachea that mucus can still accumulate above the balloon and likely still require some sort of evacuation before it overflows into the esophagus and ultimately the lungs.

The mucus evacuation routine is tough enough under (existing) 'normal' circumstances. I'm beginning to think that after the tracheotomy, the mucus evacuation routine, presuming it is still required, may be more difficult still.

I visit my primary this coming Wednesday. Any information in addition to what I already know, may be helpful.

Thanx for you time and interest.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,934
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
My understanding is that you will still have a lot of suctioning done to clear the mucous.

PALS use the cough assist through the trach to help keep the lungs clear as well.
 

Diane H

Senior member
Joined
Sep 28, 2013
Messages
636
Reason
PALS
Diagnosis
11/1985
Country
US
State
Indiana
I uncertain what you mean by an endotracheostomy. That translates into placing a tube through the mouth or nose (endo) into the trachea, but ostomy refers to a creating an opening surgically. There would be no need for a stoma to get to the trachea. Maybe this is some new procedure I haven't heard of, but I am guessing you are thinking of oral intubation versus a tracheostomy.

I was orally intubated for three days before the tracheotomy was done and it was pretty awful. They kept me pretty much zonked but I remember a very sore throat at times I was awake. It requires having the tube anchored with a strap around your head and tape to prevent you from pulling it out in your sleep or coming out when you cough. Patients who have endotracheal tubes while in the hospital have wrist restraints on to prevent them from pulling out the tube. You can certainly be suctioned through an endotracheal tube but it passes through the vocal cords and prevents any speech or sound. Any patient I ever had who was intubated and thus had an endotracheal tube and was considered likely to need the tube for more than a few weeks was given a tracheostomy to prevent damage to vocal cords and for comfort.

It is also possible to suction through the nose with a regular suction catheter and no endotracheal tube. That is generally reserved for use while waiting for a tracheostomy to be done to make it easier to remove mucous.

The tracheostomy is far more comfortable. Although the care of the stoma is a big deal in the hospital post op, once you are home it can be reduced to simple soap and water wash and rinse in the morning. It does not interfere with speech or swallowing if you are able to speak or swallow before being trached. ALS however, will in time take away those functions even with a trach. Tracheal suctioning will be frequent at first as your body adjusts to having the trach. Later it will vary day to day from every couple of hours to as little as 4 or so times in 24 hours. Tracheal suctioning causes a strong cough that helps bring the mucous up into the trachea for removal. Good hydration is critical for keeping the mucous thin and preventing thick mucus plugs. A feeding tube is eventually necessary for this.

Suctioning is scary at first but not painful. You may get too short of breath to tolerate suctioning long enough to get the mucous all out but suctioning can be interrupted to let you breathe, or put you back on BiPAP, or give you breaths with an ambu bag. In time you will be relaxed and able to tolerate longer suctioning without a freakout! Anyone, family, friends, private help, can be quickly shown how to suction and with a few opportunities to do it with supervision, they can take over. A nurse is not required for suctioning, but an agency hired nursing assistant is not allowed to.

Mucous that accumulates above the balloon cuff when swallowing gets bad would be mucous drainage from your nasal sinuses. Most of what accumulates above the balloon is saliva. There is no way that mucous or saliva or food or drink that accumulates above the balloon can "overflow" and get into the lungs unless the balloon is deflated. Suctioning right after deflating the balloon will catch the accumulation before it can drain into your lungs. Keeping the balloon inflated prevents talking but not swallowing. It only needs to be inflated all the time when your swallowing is impaired significantly. Even then it can be deflated to allow prompt suctioning to remove anything that has accumulated above the balloon.

A trach is an excellent way to remove mucous when your cough is too weak. It can be used with a cough machine or suctioning, whichever is more effective and convenient for you. You can plug the trach between suctioning if you want, and that can help prevent respiratory infections because your nose, mouth, and upper airway act to trap dust and even bacteria, humidify, and warm the air before it reaches the lungs.

The one danger of having a trach is that it is so simple to attach you to a ventilator if you end up in the ER with a severe respiratory problem. If you do not want to be put on a ventilator in a situation where you are too out of it to say or indicate "No", all your caregivers need to know that, and have a copy of your living will or Medical (or Durable) Power of Attorney to show the ER staff.

I have had a trach and vent for 16 years. I don't consider a ventilator a good choice for anyone with rapidly progressing ALS, but for moderate or slow progression it can add good quality time. A trach alone is a good choice when a cough assist machine combined with good hydration, and guafenesin, a mucous thinner available as an expectorant cough medicine, isn't enough.
 

carex

Active member
Joined
Mar 12, 2016
Messages
48
Reason
PALS
Diagnosis
10/2015
Country
Us
State
FL
Affected, Thanx again for you input.

Diane H, Thanx also for your detailed response. I had misspoke regarding the accumulated mucus etc above the balloon.
I'm having to re-read you post a time or two more to be certain I fully understand.

Currently... I've been speechless for a few months, I take nutrician via a peg. I'm having Botox injections every three months. Recently adjusted to two moths as they (injections) only seem to be affective for seven or eight weeks. Which the Pulmonologist says is normal in some patients.

I've been using a cough assist, suction and bipap machines since February. And of course the flow just gets heavier and thicker as time progresses. Needless to say, I'm getting very tired of this ever more difficult routine. Hence the serious consideration regarding a tracheostomy.

The Endotracheosromy... I most likely misinterpreted some internet information.

Again, thanx for the input... most helpful.
 

patoyeah

Distinguished member
Joined
Mar 30, 2016
Messages
249
Reason
PALS
Diagnosis
11/2012
Country
US
State
NJ
to thin the mucus Pharma Nac bought online works best for me... lots of water also to thin the mucus. - Pat
 

dn2512

New member
Joined
Dec 13, 2016
Messages
1
Reason
PALS
Country
sin
State
singapore
I was diagnosed with this deadly bulbar mnd since late 2012
it has been very sufferiing
i have excessive and swallowing problem whenever i wanted to have a meal that the problem pls help me if you can <email deleted from open forum--Mod>
please
 
Status
Not open for further replies.
Top