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Isaiah535

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Oct 7, 2013
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11
Reason
Loved one DX
Diagnosis
01/2013
Country
US
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Ok
City
Tulsa
My husband was diagnosed with bulbar ALS 2 years ago. He has a PEG tube and has lost ability to walk in his own, use his hands and arms and speak clearly. Breathing has been ok. He uses his non invasive ventilator at night. The past week he has been complaining about the settings I. His vent. He says he feels he needs it to help him breath out more. We tried the automatic setting and he didn't like it. The past few days has communicated that his throat feels like it's closing up. He couldn't sleep last night and kept coughing on extra saliva which he has been having to spit in a cup the past few weeks because it's been too much and too thick to swallow. Anyways my question is when did you know it was time to get the Tracheotomy? What signs do we look for. He has decided he does want to use it when the time comes. But how do we I I when that is? Thanks for any helpful information you all can offer.
 
I guess my answer would be a simple "When what you are doing doesn't work any more". Or maybe, since he has already decided on a trach, "Before he gets so freaked out by the breathing and coughing stuff that he won't be able to relax even with a trach." Or maybe, "Better sooner than later. Don't wait for a breathing crisis."
 
You should have the place that sold you the ventilator come and play with the adjustment. When I first started BiPap, it felt like it was suffocating me...it took 3 adjustments to get it bearable.
Another idea would be to start him on alternative meds that would dry some of his mucous out. These could be muscinex, amitrytaline, nuedexta, and a whole lot more options.
Talk to your clinic doctors and see if the think it is time for a trach.
Good Luck...hope he gets some relief.
 
please call you respiratory therapist who visits. With ALS, they expect to adjust the settings over time. They should be able to come out quickly and help out. then make an appt. with your pulmonolgist to talk about options. You may also want to increase his water intake--thick saliva can be a sign of dehydration.
 
When I got BiPAP six months ago, the pulmonologist had set the exhalation pressure way too high - as if ALS could be managet with the same parameters as sleep apnea. After finding out a way to change the settings and doing some experimentation (i.e. lowering the EP value), suitable settings were found and later communicated to the pulmo.

As regards breathing difficulties, I had one case where I suddenly became dependent on 24/7 BiPAP. Turned out I had an angry pneumonia even though there were none of the classical signs. It took three weeks but eventually I was able to breathe without the machine again. Later on I have had a few considerably milder episodes, and each time they have resolved after I have found a way to clear my bronchial tubes of phlegm - the presence of which I have not even been aware.
 
Thanks you all! This was very helpful. Certainly eases my fears and stress about all this. I think I agree now better sooner than later. I don't want to have to do it in a crisis. Scary. His next apointment is in a few weeks I will make sure to talk to them and hopefully they can test his breathing numbers again. All the other suggestions are good too. I do have the respiratory therapist on call at any time. Seems like every time he adjusts it we can't get it just right. Frustrating. About the thick saliva he is taking in about a Gallon of water a day. Is that enough? I didn't think he could be dehydrated. Also he is taking guiphenosin (sp?) for the mucous because it's all natural. He's not very willing to try any prescriptions. Anyways. Thanks for the input. I will be back more often I'm sure. God bless you all!
 
Be aware that with a trach he will need 24/7 care and that that mucous will need to be ckeared out of the tube several times a day I think.
 
Isaiah have you discussed all the full implications of the trach with your doctor?
 
Be aware that with a trach he will need 24/7 care and that that mucous will need to be ckeared out of the tube several times a day I think.

Needing 24/7 care sounds so drastic! I doubt it is safe for him to be left home alone even now. He will have to have someone around to suction him if needed but that and daily washing around the trach with soap and water is all the additional "care" needed. And anyone can do that-- no nurses needed.
 
Isaiah have you discussed all the full implications of the trach with your doctor?

Tillie

You should discuss the implications of a trach with your doctor, but recognize that few doctors have a clue about daily life with a trach or trach and vent! They have never seen a vented patient at home, much less spent a full day with them. And they tend to be very negative about trachs and vents. Better to read the pros and cons on a search of this forum. We are the people who have experienced it! There are people who regret that their spouse chose the trach and vent and found the situation became very miserable and very stressful. And there are a few whose life and life expectancy was greatly improved by the choice. My website tries to give all the pros and cons and a realistic look at all that is involved.

ALS: From Both Sides
 
Diane, I have gained a great deal of knowledge and encouragement from your site. Thank you.

What are your means of communication today?
 
My enunciation is ok and I am still able to talk, but it tends to come and go with any congestion, dry throat, and the phase of the moon! Speaking ability is the the inverse of the importance of what I have to say! If I talk too much it just shuts me off for several minutes. So does having to speak loudly. Once in a while I use Dasher to quickly type something and have it speak what I have typed but haven't explored other communication options in any detail yet.
 
Do you still use a keyboard?
 
Needing 24/7 care sounds so drastic! I doubt it is safe for him to be left home alone even now. He will have to have someone around to suction him if needed but that and daily washing around the trach with soap and water is all the additional "care" needed. And anyone can do that-- no nurses needed.

This is true. You will NOT have to sit by the bedside and stay up 24/7. Somebody just needs to be close and available. If a Trach is the only device he has, care is very easy. A person can be trained to suction in about 10 minutes. Once the Trach is healed and stable, Trach care takes about 10-15 minutes. It is not nearly the complicated, sterile ballet you see on YouTube. I saw one video where a nurse used about ten sterile cotton swabs to do tranche care. It does not have to be completely sterile once healed and stable. I read in the CHEST journal that even hospitals are moving toward a modified procedure for Trach care.....does any one know why the iPad insists on capitalizing the word trach?

I find my self on the negative side of the Trach and vent arguement. I know that in cases where there is no LMN involvement it can be great, but it is not worth it for those losing all function.
 
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Do you still use a keyboard?

I use on screen keyboards. Click N Type (free) is a great program for short bits of typing. It has word prediction capability. It also can save macros of any length for words, phrases, signatures you use frequently. Dasher is another on screen keyboard that allows for much faster typing so is great for any length of writing. Also free, it is program I use everyday.
 
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