O2 levels

[Angela44]

hi guys, moms o2 levels keep dropping multiple times each night to as low as 81. we cant get in for bipap for another week. she has bulbar als. how bad is this o2 level? i am very worried. she is extremely restless at night and says she feels trapped in her own body. it is so hard to watch as she struggles at night and i can only sit and watch.

 

[LifesWorthLiving]

Im not trying to imply anything....

A few thing to check, is the oximeter on correctly? Sometimes it gets knocked loose and has a poor pleth(reading).

Waking with a headache? More lethargic than usual? Chest pain? Ar hunger? Confusion?

Anyting indicating hypoxia(lack of o2)?

Hows her color before bed and on waking?

Im not an als pro, but airway and respatory is my thing......

 

[Angela44]

yes, yes, and yes. u have described many of her recent symptoms. headaches, poor colouring, air hunger, confusion in the night, anxiety, periods of apnea. my friend is a resiratory tech and she has come in on 2 different nights to monitor her o2 levels. i am so worried. she looks so uncomfortable especially when she should be able to sleep peacefully. als is a sad disease for everyone involved. so is her o2 levels a sign of the end?

 

[LifesWorthLiving]

It would be irresposible of me to say yes or no to that question, so i wont.

What i would do is make her neuro, pulmo, gp, pcp, and everyone elses phone ringing......

If you dont ask you wont get an answer,

Also, if your mom has slid very far south, have you asked for hospice? What are her wishes?

People can be made comfortable for a long time with proper equipment, education and care.....its up to your mom where she wants this to go and how far...

Not only comfortable, but productive and enjoyable...........i watched a man that had not smiled in ..7 months grin when he found out i graduated top of my class, the next semi smile i got was getting through academy....

 

[cervus]

I think she's not getting enough air and as she has bulbar involvement and is having all these issues, her diaphragm is weak so she's most likely not breathing in enough oxygen or expelling C02. To make her comfortable she should be using a BIPAP and if that's not her choice, a little morphine will definitely help her breathing and air hunger issues. I agree - call anybody involved at the ALS Clinic or respiratory and get them in ASAP. She shouldn't have to go through this. Yes, it's a cruel, cruel disease.

 

[Al]

Angela, 81 is serious. She needs a Bipap now, not next week. I know it's the weekend but can you geet hold of 1 of her Docs?

AL.

 

[Angela44]

because we live in such a small rural area and we have to travel so far they said we have to wait until thursday. our local hospital doesnt do bipap and said they cant do anything. our sleep clinic tells me they are booked so solid they cant give her any other appt. soooo frustrated! she is sleeping so strangely. over the course of this past night she woke for assistance to pee once, and she has been sleeping soundly with shallow breathes for over 4 hours now. Sooo NOT like her. she is usually restless and awake multiple times by now. i am so hoping she is just catching up on her sleep. i will keep everyone posted as the day goes on. anyone else experience this close to the end?

 

[rcharlton]

If your local hospital can't help you need to get to an emergency room in London or Windsor - whichever is closer.

London has a great ALS clinic.

 

[Katie C]

If she is sleeping noticeably more than normal there is a good chance she is building up CO2. The suggestion of an ER trip to a hospital with ALS knowledgeable people is a good one.

 

[dkaste]

My husband had similar symptoms going on and we were waiting to get in for his sleep study to see about the bipap. I couldn't get in anywhere and we tried to be patient. The day before we were supposed to get into Mayo for the study, I had to take him to the ER. Sadly, he never came home. This is not meant to scare you, but if she's uncomfortable Raise a Stink and get someone to listen.... good luck..

 

[LifesWorthLiving]

Make sure she isnt flat.....keep the head neck line neutral, keeps the airway open better.......and an er may be a good option to force a bipap script...

 

[cervus]

Fight for it Angela. For the best mom in the world!

 

[EGBAR]

I was given an over night oxiemtry in July of last year and mine was 53%. I was immediately put on a bipap and I have been comfortable at night since. I hope she can get the help she needs as fast as possible.

 

[LifesWorthLiving]

Hows the fight foe the bipap going?

 

[Angela44]

mom just started bipap lastnight. she seems to have slept pretty good. only up a couple times. we were able to see our neurologist when we went to london and she said mom is progressing quiet quickly now and does not expect to see anymore plateaus. that was a hard thing to hear. we are just taking things day by day and waiting for the next issue to present itself. its sad that that is what we have to look forward to. thanks for all the kind works and the wisdom of this site. i will keep everyone posted. this people of this site feel more like family than some of my own. thanks for the shoulder.