Good Morning!!

[dymphna17]

That ram gif is hilarious!  I love how ticked off he gets when the bag comes back and nails him in the back side.  He's so indignant!

I am on neurontin to ease the pain of the migraines as well as to hopefully prevent them.  I've become dehydrated while taking it a couple of times and well, let's just say, "I see dead people."  But it's the first time in many years that I've been able to develop some semblance of a normal sleep pattern.  I have to go 'round robin's barn to make that happen and take a hit for it every once in a while, but sleep deprivation is one of my biggest migraine triggers, so I'm going to keep loping around that barn!

[dymphna17]

A great morning to all. I woke up with anew aggressive rash. Extremely itchy. Took benadryl see if it helps. Covers one arm and neck. Weird. On so many meds, don't know how to figure this out.

A new rash?  That doesn't sound good Carleen.  Be sure to pay attention to what is going on with it.   Maybe even write down any changes.  Hopefully it won't last long and it won't end up in your wound or throat and sinuses.  That would be some bad mamajama.

[Bernadette]

That ram gif is hilarious!  I love how ticked off he gets when the bag comes back and nails him in the back side.  He's so indignant!

That's funny, I interpreted it as: "Ha, it's back! Now I shall conquer it!"  You can tell I have no practical experience of large livestock, can't you? 

I am on neurontin to ease the pain of the migraines as well as to hopefully prevent them.  I've become dehydrated while taking it a couple of times and well, let's just say, "I see dead people."  But it's the first time in many years that I've been able to develop some semblance of a normal sleep pattern.  I have to go 'round robin's barn to make that happen and take a hit for it every once in a while, but sleep deprivation is one of my biggest migraine triggers, so I'm going to keep loping around that barn!

Good for you! 

[Carleendiane]

Hi Bird, Hi Bird! Join me ? Tea or coffee? It's all here!

[Bernadette]

Chamomile, this morning.

[dymphna17]

That ram gif is hilarious!  I love how ticked off he gets when the bag comes back and nails him in the back side.  He's so indignant!

That's funny, I interpreted it as: "Ha, it's back! Now I shall conquer it!"  You can tell I have no practical experience of large livestock, can't you? 

I am on neurontin to ease the pain of the migraines as well as to hopefully prevent them.  I've become dehydrated while taking it a couple of times and well, let's just say, "I see dead people."  But it's the first time in many years that I've been able to develop some semblance of a normal sleep pattern.  I have to go 'round robin's barn to make that happen and take a hit for it every once in a while, but sleep deprivation is one of my biggest migraine triggers, so I'm going to keep loping around that barn!

Good for you! 

I've not had any practical experience with livestock either.  I just find that reading their minds is easier the more I watch the gif.     And thank you for the thumbs up!   

[Bernadette]

I've not had any practical experience with livestock either.  I just find that reading their minds is easier the more I watch the gif.     And thank you for the thumbs up!   

But you had Bummer. All I had were a couple of ducks and some chickens. 

[Carleendiane]

Dymphna, I will be keeping eye on it. Bird, Dymphna can read hearts. Animal and people hearts!

[Carleendiane]

Woke up. Fell asleep for 2 hrs. Wow.

[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"

Thank you for taking the time to answer my questions.  I have to say, this is fascinating.  The strides that have been made in medicine to give people a quality of life is nothing short of miraculous.  They have machines that will be muscles for you when yours no longer act as such.  And the vent doesn't force or manipulate your muscles to work, it does the work of the muscles for you.  Or if it senses your muscles attempting to do the job themselves, it will only kick in if they can't.  That is nothing short of amazing.

To be honest with you, Ches, for a variety of reasons, I have found myself questioning whether it was always a good idea to "save" everyone using modern medicine, or not.  But from the little I know about you, and the methods being utilized to keep you going, I'm really glad they are there.

i'm still not always sure if it is/was a good idea.  it is an ethical dilemma that goes through my head often.  I think that if I were just a single guy I'd probably have called it quits already... or if my children were older. 

"quality of life" is a tricky thing... i think many people could not find a way to live the way I live.  I do not always have an easy time coping.   But i think knowing that you have a lack of "quantity of life" does ante up the "quality of life"because you dont really want to waste time thats limited.  plus no temptation to be like "oh, i'll just go to confession later"


and i think my older son has had more time with me in the  6 years hes been around than all the time i spent with my dad combined (and he died when i was 17.  we are defiitely closer and have a deeper connection.  so theres that.  but at the same time,he doesnt learn many skills from me that most boys learn from their dads.  cant even teach him piano anymore but my friend comesto our house once a week to teach him and i got to sit on one f his lessons today.  I still have 2 pianos so they each got their own.  he is blowing through book 2

[Carleendiane]

STOP, CHES!!! You're breaking my heart!!!  I celebrate each day you're here. I know what you say is true. That 6 year old will remember so much about his dad. He'll help the baby "remember" dad. You know how stories sometimes turn into memories. I know that is the case with my own childhood memories. I wish you really were my child, but I'm not as strong and healthy as your mom. She can do so much for you. I have people waiting on my sorry butt. But I at least have recovery ahead of me. You have only hope of a miracle. Which hubby and I pray for each day for you. I will not lose faith if all the miracles I ask for for people I love do not happen, but I will continue asking. Nothing to lose, everything to gain.

[Chestertonian]

Always appreciate prayers the Mrs has to go to work today so they went to q divine liturgy yesterday so we are having a quiet morning here

A priest is supposed to visit later so trying to stay awake for that

[Carleendiane]

Always appreciate prayers the Mrs has to go to work today so they went to q divine liturgy yesterday so we are having a quiet morning here

A priest is supposed to visit later so trying to stay awake for that

When you tell what's happening at home I'm struck by the normalness you have despite all the monitors, wires, tubes. I love that. Yes, I do hope you can stay awake for priest coming. Can't wait till wifey is home for leave. She can  cook and nurse and do all the momma things she loves. Just take a quickie nap now so awake later.

[Carleendiane]

Good morning lynne! Nice to see you. I expect Munda to be popping in later, since it is Sunday!

[Lynne]

Good morning lynne! Nice to see you. I expect Munda to be popping in later, since it is Sunday!

It's good to be here!



So you're home now?