Old 10-20-2008, 07:40 PM #16 (permalink)
Member
 
Join Date: 2008
City: SG
State: SG
Country: SGP
Interest: I am a caregiver for someone with ALS/MND.
Posts: 148
katekath is on a distinguished road
katekath katekath is offline
Member
Join Date: 2008
City: SG
State: SG
Country: SGP
Interest: I am a caregiver for someone with ALS/MND.
Posts: 148
katekath is on a distinguished road
Default

Thank you for the info, Joel.

My mum was trying very hard to cough out the phlegm, but couldn't. She requires suctioning a lot. Usually they do it at a few hours interval, but recently, she is requesting it a lot at an hourly interval. The nurses try not to do it, if she can still take it.

Will it help for her to have a Cough Assist machine or something? I was thinking of suggesting it to the hospital, but would like more info about it before I talk to the docs and nurses.
katekath is offline  
Old 10-20-2008, 10:03 PM #17 (permalink)
joelc's Avatar
Moderator
Forum Moderator
 
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Interest: I have been diagnosed with ALS.
Posts: 2,802
joelc is on a very distinguished road
joelc joelc is offline
Moderator
Forum Moderator

joelc's Avatar
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Interest: I have been diagnosed with ALS.
Posts: 2,802
joelc is on a very distinguished road
Default

It is hard to get the phlegm past the tube. I am only occasionally successful, I would suggest suctioning rather than trying to cough it up. I don't use a cough assist but others do and think it is a good idea. Maybe someone who has a trache and uses a cough assist could share their experience.

Take care and God Bless!
joelc is offline  
Old 10-22-2008, 01:20 AM #18 (permalink)
Member
 
Join Date: 2008
City: SG
State: SG
Country: SGP
Interest: I am a caregiver for someone with ALS/MND.
Posts: 148
katekath is on a distinguished road
katekath katekath is offline
Member
Join Date: 2008
City: SG
State: SG
Country: SGP
Interest: I am a caregiver for someone with ALS/MND.
Posts: 148
katekath is on a distinguished road
Default

Thank you, Joel.

My mum has more phlegm than before and though it is whitish, I am still worried. I heard suctioning too much can cause more secretions, so I wonder if it is due to that.

I was also wondering. It is possible for PALS to be weaned off bipap during the early stages?

The hospital placed my mum under physiotherapy and even though I can see that she is weak, she seemed to have regained a wee bit of strength. Then yesterday, they told me they switch off the bipap and since the blood tests came back okay, they are not going to put her back on bipap.

I asked my mum if she feels breathless and she told me she feels fine, yet I am worried she is saying that because she doesn't want to be placed back on the bipap due to pressure from my abusive father, who is in denial about her condition. He had been denying her external help because he thinks she will make a full recovery, while I had been trying to get a nurse to care for her. It is going to be a tough battle ahead.

I really want my mum to have all the help she needs. Anyone has any advice on how to deal with people in denial?

Last edited by katekath : 10-22-2008 at 01:22 AM Reason: Added more sentences.
katekath is offline  
Old 10-31-2008, 01:13 PM #19 (permalink)
joelc's Avatar
Moderator
Forum Moderator
 
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Interest: I have been diagnosed with ALS.
Posts: 2,802
joelc is on a very distinguished road
joelc joelc is offline
Moderator
Forum Moderator

joelc's Avatar
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Interest: I have been diagnosed with ALS.
Posts: 2,802
joelc is on a very distinguished road
Default

ALS is a progressive disease and I don't believe in weaning a person off the blpap, the blpap gives a much needed rest for the respiratory muscles. Why punish a person by forcing them to expend energy trying to breath?
I also had that discussion with the PT while in the hospital getting my tracheostomy. If I could breath without it I would not be in the hospital getting one! They don't understand ALS and don't do their homework to find out.
I have retained more strength and energy by using these devices.

I am really sorry your dad is in denial and abusive! Someone needs to give him a good knock on the head! Denial is likely just his way of dealing with something he can't fix - men are bad for that!
Have a good talk with him and tell him ALS is not going to go away so he needs to deal with it!
I know it will be hard but it needs to happen.

God Bless!
joelc is offline  
Old 11-04-2008, 08:36 PM #20 (permalink)
Member
 
Join Date: 2008
City: SG
State: SG
Country: SGP
Interest: I am a caregiver for someone with ALS/MND.
Posts: 148
katekath is on a distinguished road
katekath katekath is offline
Member
Join Date: 2008
City: SG
State: SG
Country: SGP
Interest: I am a caregiver for someone with ALS/MND.
Posts: 148
katekath is on a distinguished road
Default

Okay, now I am very worried. The hospital took my mum off the bipap, did blood tests and then switch it off when the tests came back fine. Now, they took her off oxygen altogether and kept insisting she is okay. The oximeter is attached and her oxygen level fluctuates from 90% to 98%. It did dipped below 90% during suction. When she was still on oxygen (without bipap), it also dropped to 86% a few times when she sleeps. They just took her off oxygen yesterday and I couldn't stay for the night, so hopefully I can get more info on her O2 level later after I knock off work.

I kept asking about the possibility of complications and the doctors just kept telling me my mum is fine without bipap and oxygen. It seemed like they are doing so because they want to discharge her asap and due to pressure from my father, who still believes she can fully recover and return to her regular life. The docs kept asking me about discharge and are not providing much information about her current condition.

If my mum is to come home, would an emergency oxygen cylinder or a oxygen concentrator be better or it doesn't make a difference? I asked the company, who does rental for these, but all they did was tell me about money. I just want to make sure my mum has oxygen when she needs it.
katekath is offline  
Old 11-05-2008, 01:03 AM #21 (permalink)
Al's Avatar
Moderator
Forum Moderator
 
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
♥ Al Al is offline
Moderator
Forum Moderator

Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
Default

I think your mother needs the Bipap more than the oxygen. The oxygen won't help much if her lungs are not sucking in enough air. If the lung muscles and diaphram are weak her O2 levels will drop and Co2 will rise.

AL.
Al is offline  
Old 11-05-2008, 01:11 AM #22 (permalink)
Member
 
Join Date: 2008
City: SG
State: SG
Country: SGP
Interest: I am a caregiver for someone with ALS/MND.
Posts: 148
katekath is on a distinguished road
katekath katekath is offline
Member
Join Date: 2008
City: SG
State: SG
Country: SGP
Interest: I am a caregiver for someone with ALS/MND.
Posts: 148
katekath is on a distinguished road
Default

Hi Al, I did think about renting a bipap too, just in case. I was wondering about oxygen supply since the hospital had put her on both when she was on a bipap.

I am just worried that my mum might reject it the next time we need to put it back on her. Now that her inner tube is changed, she can talk and told me she find it more difficult to breath with the bipap.

Last edited by katekath : 11-05-2008 at 01:20 AM Reason: Added more text.
katekath is offline  
Old 11-05-2008, 12:45 PM #23 (permalink)
Al's Avatar
Moderator
Forum Moderator
 
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
♥ Al Al is offline
Moderator
Forum Moderator

Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
Default

they may have had the settings too high for her. When I got mine I spent 5 days in a Rehab hospital to get the pressure right and get the right mask. Sometimes if the hospital hasn't had much experience with ALS they will use O2 with the Bipap but it is usually not needed unless pneumonia is present.

AL.
Al is offline  
Old 11-05-2008, 08:27 PM #24 (permalink)
Member
 
Join Date: 2008
City: SG
State: SG
Country: SGP
Interest: I am a caregiver for someone with ALS/MND.
Posts: 148
katekath is on a distinguished road
katekath katekath is offline
Member
Join Date: 2008
City: SG
State: SG
Country: SGP
Interest: I am a caregiver for someone with ALS/MND.
Posts: 148
katekath is on a distinguished road
Default

Hmm...the nurses told me the settings were adjusted according to results from her blood tests e.g CO2 high, bipap pressure remains or increases (our rehab hospital don't accept patients with ALS so we can only seek such help at the local hospitals).

They had put my mum on 2-3 liters of oxygen when she was still on the bipap. After taking it away, they put her on 5 liters of oxygen, which was subsequently decreased to 1 liter and now it is completely off.

I think I better check with the visiting neurologist again and see if proper measures were actually taken.
katekath is offline  
Old 11-06-2008, 11:56 AM #25 (permalink)
joelc's Avatar
Moderator
Forum Moderator
 
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Interest: I have been diagnosed with ALS.
Posts: 2,802
joelc is on a very distinguished road
joelc joelc is offline
Moderator
Forum Moderator

joelc's Avatar
Join Date: 2006
City: Abbotsford
State: BC
Country: CA
Diagnosed: 09/2005
Interest: I have been diagnosed with ALS.
Posts: 2,802
joelc is on a very distinguished road
Default

You might find the following information helpful:

Patients with neuromuscular diseases who are developing progressive respiratory failure due to respiratory muscle weakness will die unless mechanical ventilation is used. The rate of progression is often hard to predict. Some patients seem suddenly to experience life-threatening hypercapnic respiratory failure. They may not have been aware of gradually increasing symptoms and signs, particularly since they are often not physically active and are often not being regularly monitored with simple pulmonary function tests.

Administering oxygen does not provide assistance to the weakening respiratory muscles, but gives both the patient and the doctor the false impression that appropriate treatment is being provided. While in fact hypoventilation is mistaken for an oxygen transfer problem. Indeed, administering oxygen can mask the problem. Also there is a danger of causing respiratory depression by giving oxygen (see reference to the article by Dr. Peter Gay - Mayo Clinic - below). Oxygen is NOT the treatment for hypoventilation. It will improve the SaO2, but not the hypoventilation and may increase the danger of dying of sudden respiratory failure.

In hypercapnic respiratory failure due to hypoventilation, the SaO2 falls due to the rise of the CO2. The alveoli in the lungs (tiny gas exchange units) should clear most of the CO2 out with each breath. Instead, with hypoventilation, CO2 accumulates and thus there is decreased room in the alveoli for oxygen. When mechanical ventilation using room air is provided, it lowers the CO2 in the alveoli, corrects the SaO2, and rests the respiratory muscles. The ventilator should be adjusted to achieve a normal SaO2, on room air. If oxygen is being administered, one cannot use noninvasive oximetry to tell whether enough assisted ventilation is being provided; repeated arterial blood gas specimens (ABGs) would be needed.

When there is respiratory failure in neuromuscular patients (ALS, post-polio, SMA, muscular dystrophy, etc.) who have no additional pulmonary disease that impairs oxygen transfer, the ventilator set-up is adjusted to:
be comfortable for the patient;
achieve SaO2 of 95% or higher on room air (this can be measured with a finger-sensor oximeter);
assist the patient to effectively cough and clear secretions;
provide improved oral communication (if vocal communication is possible).
It has been common for people using noninvasive nasal ventilation (NPPV) with a bi-level positive pressure unit to use inadequate settings; frequently, they are not monitored with clinical evaluation and oximetry. The EPAP is often set too high – usually it should not be higher than 3-4 cm H2O; the IPAP is set too low – usually it needs to be 12-16 cm H2O and adjusted to achieve an oxygen saturation of 95% or higher.

Some situations may require administering oxygen temporarily, such as pneumonia due to infection or aspiration. If this occurs in patients with respiratory muscle weakness and hypoventilation, then it is important to provide both assisted ventilation and supple-mental oxygen, and use ABGs to monitor them.

(The late Dr. Oppenheimer, former head of pulmonary medicine at UCLA, sent me that article a few years back. He went on to tell me that when PALS are given oxygen it tricks the brain into thinking the body doesn't need to put forth the effort to breathe.)
joelc is offline  
Old 11-06-2008, 07:34 PM #26 (permalink)
Member
 
Join Date: 2008
City: SG
State: SG
Country: SGP
Interest: I am a caregiver for someone with ALS/MND.
Posts: 148
katekath is on a distinguished road
katekath katekath is offline
Member
Join Date: 2008
City: SG
State: SG
Country: SGP
Interest: I am a caregiver for someone with ALS/MND.
Posts: 148
katekath is on a distinguished road
Default

Hi Joel,

Thank you for the article. It looks like the hospital took a wrong step by giving her oxygen. She did have pneunomia and other infections when she was on bipap and O2, so giving my mum O2 is fine as stated from the article then and when she was admitted, they stated she had an on-going lung infection.

From what I infer, I think I better confirm with the docs what pulmonary function tests had been done to check CO2 accumulation. Many thanks for the info.

Wan
katekath is offline  
Old 11-17-2008, 12:15 AM #27 (permalink)
Member
 
Join Date: 2008
City: SG
State: SG
Country: SGP
Interest: I am a caregiver for someone with ALS/MND.
Posts: 148
katekath is on a distinguished road
katekath katekath is offline
Member
Join Date: 2008
City: SG
State: SG
Country: SGP
Interest: I am a caregiver for someone with ALS/MND.
Posts: 148
katekath is on a distinguished road
Default Update

So in fear of superbugs, my mum was transferred to a step-down hospital for further treatment.

Her pCO2 was 59.4 mmHg upon her discharge from the previous hospital and after many questions and showing them the article, somehow all the doctors told me "this is normal in her case". I understand what they are trying to refer to, but it frustrates me that they seemed to want her to undergo another respiratory collapse before being convinced that she needs the bipap. Our body does regulate and "get used" to having high pCO2, but there is a tipping point. So it confuses me as to why all the doctors kept telling me everything is fine.

My mum on the other hand, had outright reject having the bipap, stating she can not move with it. I tried to explain to her about having the bipap hanging from the back of a wheelchair so she can still be mobile, but the word "wheelchair" made things worse. She refuses to listen anymore.

She will be having an appt with her neurologist this Friday. Hopefully I can get more answers. All the doctors I have met so far have so little knowledge of this horrible disease to begin with and I hope somehow, they can be educated more about it.
katekath is offline  
Old 11-17-2008, 09:58 AM #28 (permalink)
Moderator
Forum Moderator
 
Join Date: 2006
City: Anytown
State: New England
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 3,564
CindyM is on a distinguished road
CindyM CindyM is offline
Moderator
Forum Moderator

Join Date: 2006
City: Anytown
State: New England
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 3,564
CindyM is on a distinguished road
Default

I think it is terrible when we have to fight for treatment and educate the doctors while coping with the disease. Just seems doubly unfair, IMO! Cindy
CindyM is offline  
Old 12-02-2008, 06:28 PM #29 (permalink)
Member
 
Join Date: 2008
City: SG
State: SG
Country: SGP
Interest: I am a caregiver for someone with ALS/MND.
Posts: 148
katekath is on a distinguished road
katekath katekath is offline
Member
Join Date: 2008
City: SG
State: SG
Country: SGP
Interest: I am a caregiver for someone with ALS/MND.
Posts: 148
katekath is on a distinguished road
Default Update

My mum's appt with her neurologist had been postponed till she sees the ENT specialist in Jan. This is recommended by her current doc and her neuro as the doc observed that she has a lot of secretions when moved. That was what happened when she transferred hospitals.

He asked if she smokes as they suspect her secretions were due to smoking, but my mum is a non-smoker. The only thing I can think of is second-hand smoking from my late uncle, who used to live with us for more than 10 years and her ex-co-workers, who smoked heavily.

They did an X-ray, but everything came back normal.

My mum had also made the decision not to go back on the bipap. I hope she will change her mind and wished they had not tried to take her off it then. But I have to respect whatever decision she makes.
katekath is offline  
Old 12-17-2008, 01:24 PM #30 (permalink)
New Member
 
Join Date: 2007
City: Dallas
State: TX
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 93
Carolan is on a distinguished road
Carolan Carolan is offline
New Member
Join Date: 2007
City: Dallas
State: TX
Country: US
Interest: I am a caregiver for someone with ALS/MND.
Posts: 93
Carolan is on a distinguished road
Default

This situation makes me ill. I am so sorry that you are dealing with such difficult health care issues. I hope it continues to improve.

Oxygen is not the issue. CO2 buildup is the biggest concern. If the respiratory muscles are not able to exhale air fully, CO2 will linger in the lungs and blood stream. This can be toxic and cause confusion, hallucinations (my mother thought she was in an episode of Grey's Anatomy at one point), and blackouts. A blood gas analysis will confirm whether there is CO2 buildup. Mom almost died from it--essentially, respiratory failure. A mechanical ventilation device, be it bi-pap or a full-fledged ventilator, will solve this problem. It doesn't do any good to put more oxygen into the body if the body is just going to convert the added oxygen into carbon dioxide but then not have the ability to get rid of the CO2.

We do have supplemental oxygen, but at this point, my mother is not really able to breathe on her own at all and relies on the ventilator to breathe for her.

Pseudomonas is the infection that Nettie is thinking of. You'll never forget the foul smell after you encounter it. In fact, I am conjuring it up right now, just for dramatic emphasis. Ugh. OK, now I am conjuring up the smell of sugar cookies to get rid of that awful stench. Here is a link to some info on pseudomonas: http://emedicine.medscape.com/article/970904-overview

Just remember, "pseudo" means "false," and "monas" means "one" (apparently referring to the way that the bacteria is structured). That helps with the spelling.

Oh, I truly hope that things improve for you, Katekath. You are doing an amazing job of caring for your mother. Please remember that as you fight these battles.
Carolan is offline  
Closed Thread

Tags
clothes, hope, night, nurses, phlegm, pneumonia, questions, trach


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Doing trach too early? HalsWifeFran General Discussion About ALS/MND 29 05-07-2011 11:58 PM
Trach and eating ccjjcc General Discussion About ALS/MND 2 03-17-2011 01:40 AM
Trach questions aquirk Current Caregivers (CALS) 2 01-06-2011 06:05 PM
No PEG, No trach.. LovemyPALS Current Caregivers (CALS) 11 10-02-2010 10:38 PM
trach and vent irismarie People With ALS - "PALS" 8 01-28-2010 06:50 PM
Trach when? Cherry People With ALS - "PALS" 12 11-09-2009 03:53 AM
Trach vs BiPap ptich General Discussion About ALS/MND 3 12-26-2008 08:58 AM
trach mannco74 People With ALS - "PALS" 9 06-18-2007 07:57 PM
trach? jacquelyn General Discussion About ALS/MND 4 06-18-2006 10:10 PM
dad got the trach dana General Discussion About ALS/MND 7 02-13-2006 12:58 PM


All times are GMT -5. The time now is 11:29 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016