Decline in breathing

Shock--disbelief! I've read it but....

My pals fvc was measured (good force and tight lip seal the R t reported) 27% at clinic yesterday! It's been a rough few months of endless nights with no sleep! Breathing in sept was 68%! He can articulate but the diaphragm is weak so he's hoarse sounding and has a quiet voice (and sure makes it hard to get in calories with the swallowing difficulties and pressure on diaphragm)!

Hospice starting. Comfort care is key! Of course it is---I've been trying everything possible to provide comfort and the very best care!

Thank you for listening/reading! I know we are not alone! Happy Easter forum friends!

I know exactly what you are going through. If your PALS has the ability to make a good seal you could always consider a sip & puff ventilator. Tim's voice is so much stronger with his and he doesn't have to wear his bipap during the day. My heart goes out to you.

Paulette

oh minnesota I can understand your shock, we think we are on top of things but we aren't really, it's all out of our control.

I so know what you mean by: Comfort care is key! Of course it is---I've been trying everything possible to provide comfort and the very best care!

That's how I feel, as I say well I can do now is give him as much comfort as possible, I realise well I've been doing that all along, but this is different now, a different level.

Holding your hand as we help our beloveds.

Hi, Marie --

These are sad times. I know Jim understands and loves you for the care you are giving him.

You are in our thoughts, you are not alone.

Max

Minnesota feeling so bad for you both. Different level is definitely the right way to put it, every moment, every hug so precious!
You are doing a great job!
Our hearts are with you.
Hugs
Linda

My heart aches for you, Marie. I pray an overflowing of peace and grace for you both.

Phil

You are in my prayers, God Bless

I am sorry. Special prayers going up for you!

deep breaths Marie, and deal with things a moment at a time.
prayers for you and Jim

Thank you very much! So difficult to tell the girls and then came the emotions and breathing difficulties and mucous build up for Jim--thank goodness for the suction machine--he likes it for his nose! I can't wipe it fast enough! Our dining room became his "track" so he could pace in his Pwc to settle down and breath better!

dear Lord you and Tillie have had a rough day today. breaks my heart for your children and my own a well. You give me strength, guiding me through this mess and showing me it can be done with such grace.

Morning, Marie - thinking of you and Jim ...

I can so relate Marie, we think we are getting ready for all this but we aren't really ever ready for any of it.

hugs to you and Jim.

Getting emotional is the hardest thing with these breathing issues, Jim is so lucky to have you looking after him in this.

Marie we all stand together right beside you.
Hugs
Linda

Continued prayers for you and Jim, Marie.

-Phil