Shortness of Breath

[codyclan]

For the past few days, my PALS has gotten progressively more short of breath. We called the clinic and they have ordered a BiPap. The company is supposed to be calling us this week to set up an appointment, but I don't know when or if we should go to the local ER. He is definitely uncomfortable with any exertion, including taking a drink from a straw, transferring to the toilet or to a wheelchair. His speech is soft and breathy.

Last FVC at clinic in March was 50% and they talked about a BiPap at that time, but he could lay flat and slept through the night. They thought his FVC might have been deceptively low due to poor lip seal.

My concern is that he is barely eating. He feels out of breath when eating. Do we just wait for the BiPap or take action? I doubt our local hospital has much experience with ALS.

Tracy

 

[gooseberry]

Call the clinic. Difficulty breathing while eating can lead to aspiration, pneumonia, choking,etc

Try the tervis straws. The diameter is much bigger and it is easier to drink. Others would work just as well but I dont know a brand name.

 

[affected]

Definitely call the clinic and be very firm that you have a great concern for his his breathing and need help now.

Let us know how you go too, it's tough to watch

 

[codyclan]

We ended up in ER. He absolutely couldn't catch his breath even when at rest. He was miserable and scared. Did blood gases and co2 was up. Have him on a bipap now. They ar going admit him. Crap.

 

[gooseberry]

So sorry Cody. If you can stay at the hospital with him, that would be good.

 

[codyclan]

Thanks gooseberry, I am staying. Doc originally wanted to give him oxygen to make him more comfortable . I expressed concerns about that and they agreed to do blood gases first. Thank goodness !

 

[affected]

Well done for advocating for him re the blood gasses!

It's the usual first thought to give O2 as it is the normal procedure for pretty much any other disease. WE know that even if their breathing seems OK so far, steer away from O2 therapy and onto bipap. If a little O2 is needed through a bipap it is a different thing, but O2 prongs up a PALS nose is just NO.

Now if he is in hospital and on bipap you are in the best place to get him used to it, hopefully they understand how to tweak the settings to get him really good. And you now have yourself in a position to demand you need bipap at home, and hubby will agree as he has had a scare.

Not a good way to have it happen as it was very stressful for you both, but try to see it as the way upwards again for now xx

 

[Ells]

So sorry it escalated like this Cody.

He should get the required help now and hopefully a BiPAP will make both your lives less stressful.

 

[affected]

How are you guys doing Cody?

 

[codyclan]

We are doing much better, Tillie. They're keeping him another day or two but his appetite is better so he ate more than he has in the last few days. Hes on bipap when he sleeps but otherwise is off.

They put him on antibiotics because they said they think a viral infection may have caused a period of accerlated progression. He sure looks and sounds better than he has in last few days.

When he goes home, we will be going home with a trilogy.

Thanks for checking on us.

Tracy

 

[affected]

That's such great news!

After a big scare, it must be wonderful to see him eating and looking better. So glad you are going home with a bipap too, you must feel a little more in control. Thanks for updating

 

[codyclan]

We feel much better, both of us and this was a good reminder to him that being more proactive than reactive is a good idea. He resists most everything until he needed it yesterday. Waited a bit too long for bipap.

On the other hand I have to fight that oxygen thing with EVERY shift change!!!!