NIght Time Breathing Troubles

[Kim C]

Last night mom work my dad up at 3:30 saying she "couldn't breath". We got her up and once she was sitting up she was better. She was heaving pretty good when we got her up. I know this is just another step in the disease. She doesn't have any breathing equipment as up until this morning, according to mom, she was not having any problems. The Care Tenders RN is coming by today to listen to her lungs and make sure we don't have a pneumonia going on but she doesn't seem to have a temp. Actually we tried to take her temp this morning and got a reading of "92". I guess she just can't get the thermometer under her tongue very well. We're looking for a thermometer that goes in the ear now.

Is this another turn in the road for us?

How does a BiPap work? I doubt she would go for one.

How rapidly do things digress once the breathing issues begin? Yesterday when the RN was by, everything was fine, pluse Ox in mid-ninties.

Kim

 

[Barbie]

I would put in a call to her ALS doctor to get an eval for the bipap. have you asked her about using the bipap? it is very scary not to be able to breath and there is no reason not to use one. it is non-invasive, and sits on the table with a mask that goes over the nose and or mouth and gives air (not oxygen). there are many styles of masks and the settings are designed to meet the patient's needs. it will make her much more comfortable and she can use it as much or as little as she wants.

in the mean time, keep her head propped up at night or on her side, laying flat it is common to have problems breathing. also air hunger can be eased by morphine, but that can also lead to a more depressed respiration, so that needs to be watched closely.

the is no time table for how rapidly it will progress sorry to say. I would work on getting her more comfortable immediately.

 

[Annie's Phil]

Breathing difficulty is typically first noticed when the PALS is lying down. The abdominal organs place more pressure on the diaphragm and the breathing muscles have to work against gravity to displace the organs to allow the chest to expand. Reduced volume leads to lower O2 but higher CO2 level in the blood, which can cause morning headaches. Air hunger is typically caused by inadequate O2. BiPaps are programmed to provide a high and low pressure cycle through a face mask so assist the breathing muscles in ventilating the lungs. Administering O2 can relieve the air hunger but will not reduce the buildup of CO2, which requires ventilation of the lungs, either naturally or via mechanical assistance.

 

[Kim C]

Care Tenders RN just called me. Says pulse ox is 97, air is moving through lungs. She thinks it is ALS related. She had already talked to ALS Clinic prior to visit. She is going to call them now and report findings. She suggested bipap as did the ALS clinic when she spoke with them is morning. Might go for a chest x ray just for precaution. Mom told nurse she was still having a little trouble breathing. Respiration rate 12/minute. If I don't hear back from the RN in the next hour or so I may call the ALS clinic myself.

 

[bowser]

I would recommend a hospital bed for anyone with ALS

 

[adozi]

My ergonomic bed made such a difference. Definitely get a hospital bed or an ergonomic bed. And get bipap, cough assist and suction machine.

 

[patrick123]

I have been on a BiPap since march. It took me about a week to get used to. But once I did I started sleeping through the night. And no more headaches in the morning. One other benefit it give me sense of security. When I sleep. I take much deeper breaths. Don't be afraid of it and take back control. I also have a wedge pillow that keeps my head elevated and that helps to.

 

[Txgirl]

I use a Trilogy bipap/noninvasive ventilator and it works great. This is the only bipap I would recommend for PALS.

 

[ECpara]

A Trilogy was just recommended to my husband by the RT that set him up with his first ever cough assist and suction machine. He claims he has seen wonderful results for PALS using the Trilogy. So we're going to look into it. Sounds like your mother would really benefit, Kim.