Good Morning!!

[Carleendiane]

Good morning.  Feel like crap. Going for check up today. Hope all is well. Sunny and beautiful.

is it a follow up

Hope it goes well

How's the pain today

Yes, ches, one week check up. Probably remove tapes on wounds.

I am in great pain. Not much difference. Which could just be negative attitude. Maybe some has left.

Sounds like you actually had an interesting day yeterday. I'll bet Friday can't get here soon enough. Aren't you glad the illness doesn't have to run through 8 children!

[Carleendiane]

Out of bed already and having first breathing treatment of the day..Dizzy and exhauste they make me wear this vibrating vest thing that shakes all the gunk out of your lungs

Didn't sleep well becausyy vent kept alarming until they changed the circuit

Sleep is essential. Hate to lose it because of electronics 

[Chestertonian]

Good morning.  Feel like crap. Going for check up today. Hope all is well. Sunny and beautiful.

is it a follow up

Hope it goes well

How's the pain today

Yes, ches, one week check up. Probably remove tapes on wounds.

I am in great pain. Not much difference. Which could just be negative attitude. Maybe some has left.

Sounds like you actually had an interesting day yeterday. I'll bet Friday can't get here soon enough. Aren't you glad the illness doesn't have to run through 8 children!

Haha I wish we had 8 children then we'd finally be"real Catholics"

Will offeeuptofau for you

[orate]

FOR Carleen and Ches along with my PRAYERS

[Carleendiane]

The wind today is wild I tell you! Wild!

[orate]

The wind today is wild I tell you! Wild!

Here, too!  Just got back from running to the bank and shipping my computer back to Dell.  That was one frustration yesterday that I should have offered up.  But, alas...

I am, however, very grateful to God that I am able to run small errands again!

[dymphna17]

Good Morning Viet...er...Everybody!!!!  It is still morning and I am awake instead of just going to sleep.  God is so good to me!

It looks like the wind is finally letting up here, thank you God.  The last couple of days were crazy wind days here.  There were semi tractor trailers literally being blown over!  Not to mention it whipping the wild fires into a frenzy.  And don't get me started on crazy hair!  It was as if we had been riding the bike trying to brush it out last night.  I see now that it's out of the south at around 5 mph.  We'll take it! 

Hope everybody's morning gets better soon.  Your vent has a circuit, Ches?  I thought they were all connected to a machine that hung on a pole and plugged into an outlet in the wall.  This must give you more autonomy, right?

I'm really sorry you are still in so much pain, Carleen.  Wish I could take it for you, you too, Ches and Orate, all of you who are suffering so much, but God wants you with Him and He knows what He's doing, so I'll let Him.  Yes, I said that as if I had a choice.     I hate to see you all have to go through this, though. 

[Chestertonian]

Your vent has a circuit, Ches?  I thought they were all connected to a machine that hung on a pole and plugged into an outlet in the wall.  This must give you more autonomy, right?

The vent circuit is the tubing that connects the ventilator to the trach,  as well as other stuff like speaking valves, inline suction etc.  at home i have 2 ventilators,one is on the pole next to my bed,and the other one is mounted to my chair and runs on a rechargable battery.  or youcan plug it into the wheelchair itself and it will charge

here,i use the hospital vnt while in bed and use my own vent mounted to my chair.  going back and forth between different types of vents is weird though.  it has its own way of "breathing" for you so even if the mode is comparable,it isnt 100% the same

[dymphna17]

Your vent has a circuit, Ches?  I thought they were all connected to a machine that hung on a pole and plugged into an outlet in the wall.  This must give you more autonomy, right?

The vent circuit is the tubing that connects the ventilator to the trach,  as well as other stuff like speaking valves, inline suction etc.  at home i have 2 ventilators,one is on the pole next to my bed,and the other one is mounted to my chair and runs on a rechargable battery.  or youcan plug it into the wheelchair itself and it will charge

here,i use the hospital vnt while in bed and use my own vent mounted to my chair.  going back and forth between different types of vents is weird though.  it has its own way of "breathing" for you so even if the mode is comparable,it isnt 100% the same

Wow!  That would be really weird.  To have to mentally adjust from one to the other, would be a pain, much less the body, I would think.  Sorry to keep peppering you with questions, but I really would like to understand.  Does the vent breath for you 24/7 or does it just kick in if you are having difficulty?

[Carleendiane]

Good Morning Viet...er...Everybody!!!!  It is still morning and I am awake instead of just going to sleep.  God is so good to me!

It looks like the wind is finally letting up here, thank you God.  The last couple of days were crazy wind days here.  There were semi tractor trailers literally being blown over!  Not to mention it whipping the wild fires into a frenzy.  And don't get me started on crazy hair!  It was as if we had been riding the bike trying to brush it out last night.  I see now that it's out of the south at around 5 mph.  We'll take it! 

Hope everybody's morning gets better soon.  Your vent has a circuit, Ches?  I thought they were all connected to a machine that hung on a pole and plugged into an outlet in the wall.  This must give you more autonomy, right?

I'm really sorry you are still in so much pain, Carleen.  Wish I could take it for you, you too, Ches and Orate, all of you who are suffering so much, but God wants you with Him and He knows what He's doing, so I'll let Him.  Yes, I said that as if I had a choice.     I hate to see you all have to go through this, though. 

Your empathy is inspiring dymphna. Part of why I love you so much. And if you took what is rightfully ours, would it interfere with God's plans? Maybe. Not worth the risk, so I think I'll just keep on keeping on, thank you very much though.  Plus, I'm still happy. Not matter what's going on with brother ass, it can't steal my joy. Joy is much deeper than that and much more stable. Has very little connection to brother ass. Thank God. Because I would have shot him a long time ago! Right?

[dymphna17]

Good Morning Viet...er...Everybody!!!!  It is still morning and I am awake instead of just going to sleep.  God is so good to me!

It looks like the wind is finally letting up here, thank you God.  The last couple of days were crazy wind days here.  There were semi tractor trailers literally being blown over!  Not to mention it whipping the wild fires into a frenzy.  And don't get me started on crazy hair!  It was as if we had been riding the bike trying to brush it out last night.  I see now that it's out of the south at around 5 mph.  We'll take it! 

Hope everybody's morning gets better soon.  Your vent has a circuit, Ches?  I thought they were all connected to a machine that hung on a pole and plugged into an outlet in the wall.  This must give you more autonomy, right?

I'm really sorry you are still in so much pain, Carleen.  Wish I could take it for you, you too, Ches and Orate, all of you who are suffering so much, but God wants you with Him and He knows what He's doing, so I'll let Him.  Yes, I said that as if I had a choice.     I hate to see you all have to go through this, though. 

Your empathy is inspiring dymphna. Part of why I love you so much. And if you took what is rightfully ours, would it interfere with God's plans? Maybe. Not worth the risk, so I think I'll just keep on keeping on, thank you very much though.  Plus, I'm still happy. Not matter what's going on with brother ass, it can't steal my joy. Joy is much deeper than that and much more stable. Has very little connection to brother ass. Thank God. Because I would have shot him a long time ago! Right?

OK, who is brother ass and why would he steal your joy?  I'm thinking this is some kind of religious story, but I'm not sure.  And how do I find some of this joy you speak of?   

[Carleendiane]

Good Morning Viet...er...Everybody!!!!  It is still morning and I am awake instead of just going to sleep.  God is so good to me!

It looks like the wind is finally letting up here, thank you God.  The last couple of days were crazy wind days here.  There were semi tractor trailers literally being blown over!  Not to mention it whipping the wild fires into a frenzy.  And don't get me started on crazy hair!  It was as if we had been riding the bike trying to brush it out last night.  I see now that it's out of the south at around 5 mph.  We'll take it! 

Hope everybody's morning gets better soon.  Your vent has a circuit, Ches?  I thought they were all connected to a machine that hung on a pole and plugged into an outlet in the wall.  This must give you more autonomy, right?

I'm really sorry you are still in so much pain, Carleen.  Wish I could take it for you, you too, Ches and Orate, all of you who are suffering so much, but God wants you with Him and He knows what He's doing, so I'll let Him.  Yes, I said that as if I had a choice.     I hate to see you all have to go through this, though. 

Your empathy is inspiring dymphna. Part of why I love you so much. And if you took what is rightfully ours, would it interfere with God's plans? Maybe. Not worth the risk, so I think I'll just keep on keeping on, thank you very much though.  Plus, I'm still happy. Not matter what's going on with brother ass, it can't steal my joy. Joy is much deeper than that and much more stable. Has very little connection to brother ass. Thank God. Because I would have shot him a long time ago! Right?

OK, who is brother ass and why would he steal your joy?  I'm thinking this is some kind of religious story, but I'm not sure.  And how do I find some of this joy you speak of?   

Brother ass is what St. Francis called his body. The joy is not giddy, it more like peace and satisfaction that is given as grace through reception of sacraments and resignation I guess. Not sure that is theologically correct but it is how I describe the feeling deep down in my soul. Joy is completely separated from the pains and suffering in daily life. It doesn't really fluctuate much unless I allow events to steal it from me. More compared to the Mark on our soul by certain sacraments, just a comparrison. Again probably not theological, merely what makes sense to me.

[orate]

Good morning everyone!

[Carleendiane]

Good morning everyone!

That's me. I am finally moving. Thanks for opening the thread. Someone kept the ram off my chest last nite because the pain is just a little less today. Stupid bad, but a tad better. Way overslept the 12 hour med . Should take at 8 am. It's less windy. Sunny. Still waiting for last ewe to drop her babies. It's fun in my barn.  Grandkids coming to clean my house today. Yahoo. It will be fun!

[Chestertonian]

Your vent has a circuit, Ches?  I thought they were all connected to a machine that hung on a pole and plugged into an outlet in the wall.  This must give you more autonomy, right?

The vent circuit is the tubing that connects the ventilator to the trach,  as well as other stuff like speaking valves, inline suction etc.  at home i have 2 ventilators,one is on the pole next to my bed,and the other one is mounted to my chair and runs on a rechargable battery.  or youcan plug it into the wheelchair itself and it will charge

here,i use the hospital vnt while in bed and use my own vent mounted to my chair.  going back and forth between different types of vents is weird though.  it has its own way of "breathing" for you so even if the mode is comparable,it isnt 100% the same

Wow!  That would be really weird.  To have to mentally adjust from one to the other, would be a pain, much less the body, I would think.  Sorry to keep peppering you with questions, but I really would like to understand.  Does the vent breath for you 24/7 or does it just kick in if you are having difficulty?

When I first got my trach in November, iwas in the ICU for a coupleof days and the vent was doing all the work but i think it is because surgery takes so much out of me.  Then I was able to get off the vent for a few hours during the day, and most of the time I was hooked up to it, it was only in pressure support mode which is similarto bipap. what happens is,you initiate the breaths,but it ensures that youre taking enough air in,and  what it can do is supplement the work of breathing that your body is already doing.     but as time has gone on,ihave had to spend more time using volume controlled modes too.  at this point, I can't go off the vent and require some degree of respiratory support 24/7.

theychange my vent settings on a regular basis because with progressive illness,your needs are always changing.  one day you can doit the next day, youcant.  fighting the vent becomes less of an issue when the muscles stop working.  most of the time, it just does its thing and i am doing less and less of the work

it can sense ifyou're initiating a breath,and it will deliver a breath at that time, and makesure it is a full breath, 15 breaths per minute  so if youre not initiating all those breaths it will make sureyou're getting them.  it also has a "sigh" feature which will make the vent "sigh" at random times.  apparentlythis has benefits because your lungs overinflateor something like that.  soevery so often, the vent will "sigh" which is weird...i'll sit there like..."what wasthat??"

or i'll be talking and all of thesudden, I have to wait for it to finish what it's doing

sighing is something people do a lot when they're frustrated, bored, stressed, or sad...  so it's kind of weird when it's "automatic"