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rajiv

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Hi,

My mom in India was diagnosed with MND in Sep 2006. It started in her abdominal muscles, spread to the back and legs. Her speech is not slurry but has lost its volume. She speaks clearly but with a very very low volume. She can still swallow but has started to have trouble breathing. In the last few days she was admitted to the hospital with shortness of breath and went into respiratory arrest twice.

First time she went into respiratory arrest, the intubated her and stabilized her. CO2 levels were up to 55. Entubated, she was on a vent for 2 days. After 2 days they took the tube out and stopped using the vent. After that they put her on the BiPAP. Initially she resisted the mask a lot but slowly got used to it. The CO2 levels came back down but here breathing through the mask was still very difficult. Then they slowly weaned off the BiPAP to see how the CO2 levels hold up. They held up pretty OK and so they reduced the amount of time being spent on BiPAP.

Every thing was going very smoothly as she was recovering. Then she suddenly went into another respiratory failure. This time it seems to have been due to aspiration because she has no cough reflexes. They intubated her again and got her to stabilize on the vent.

At this point we are considering going for a tracheostomy and using invasive ventilation. My reasons for this:

1. BiPAP is very uncomfortable and raises my mom's anxiety level which in turn makes her breathe harder.
2. Since she has no cough reflex there is danger of aspiration
3. Vent with tracheostomy would be much easier on her breathing and I believe will improve her quality of life.

In this regard I have a few questions that I would love to hear your experiences and opinions on:

1. When does one consider invasive vent as opposed to BiPAP? Reason I ask this question is that the doctors are very resistant to tracheostomy and invasive ventilation and when I read the forums I see that most folks are infact using BiPAP.
2. Once you have tracheostomy done, can you use a BiPAP machine through the trache tube? I guess I am trying to see if we can avoid on going to a total ventilation and use BiPAP without the discomfort of the mask.
3. Does anyone have any recommendations on a ventilator to use at home? Something that is reliable, portable and has good failsafe modes, alarms etc.

My apologies if some of these questions above seem to be making some incorrect assumptions. Any help and experiences will be extremely helpful.

thanks,
rajiv
 

CindyM

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Hello rajiv. I am sorry your Mom is having such a tough time. We have a lot of experienced members here, many with PIPAPs and some with vents so I am sure somebody will be able to give you some tips. Welcome to the forum. Cindy
 

quadbliss

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392
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Hi rajiv,

I have been on a vent for about 2 1/2 years, so I will add my perspective to your dilemma. I would say your mother is definitely ready to move on to a trach/vent (if she wants to). Respiratory arrest and aspiration make that case. Once a person has a trach I see no reason not to use a vent. It is more robust and dependable than a Bi-Pap. The Pulmonetics LTV 950 is becoming very popular due to its small size, dependability, and built back-up battery.

Mike
 

rajiv

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Sep 7, 2007
Messages
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Reason
PALS
Country
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University Place
Thanks very much

Hi Mike,

Thanks very much for your perspective and pointers. We have decided on getting a trache. Currently she is intubated and once we are confident that she is stable, we expect to do the procedure in a day or so.

By the way, since the respiratory arrest two days ago, as of last night the doctors are suspecting that she also has vocal chord disfunction which apparently can lead to sudden lack of air supply to the lungs. A trache will solve this problem too.

I will look into the LTV 950.

thanks again,
rajiv
 
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