To ventilate or not to ventilate.

[Gracie]

So....more news today. None of it good. MrG and I have to decide which is best for him. In a nutshell....if he is ventilated, he dies while in a drug induced coma, asleep, feels no pain and eventually I pull the plug when he begins to curl up in a fetal position.

Or, not ventilate, he goes to rehab to heal his chest holes from the tubes (3) he currently has once he is released, then he comes home to live on oxygen and hospice to help with his dying that I get to witness.

That about sums up what the past two days have been. MrG says to ventilate, regardless of his high risk. Bad heart, ya know. Collapsed lung that is scarred beyond repair they are trying to deal with in the ICU, etc. Then again, he would have to be alone because they will not let me in since I am unvaxxed and refuse to be...even for MrG. I wanna die when God calls me..not when some schmuck wants me dead via a jab.

Nothing is going to fix his lung. He can live MAYBE a year or so just on oxygen tanks and laying in bed. OR, he can go faster being on a ventilator in a ICU unit and be unaware. He fears suffering and hooked to a machine, hence a ventilator. On the other hand....maybe he can live a semi tolerable life at home with hospice and dies quietly via morphine when the time comes. Decisions decisions.

I told him I do not want to make a decision..or rather, WE should not make a decision until we get a final answer from the pulmonologist in just HOW severe this deadly disease is and so far, we are getting no response. Just mumbo jumbo. So I left a message with the ICU that we need to do a advance directive but cannot until HE tells us the severity of this disease. So far..no response. WTF, already? Can he not SPEAK to us about this? Guess not. MrG is just a body, not a soul, fix it best he can, move on to next patient. NOT! I want some fucking answers and I want them NOW. So in a few hours, I plan to harass the hospital AGAIN, asking the Dr to CALL ME and TALK TO ME, so I can discuss with MrG what the plan of action is going to be. Slow death or fast death. Thats not too much to ask, is it? And this "so busy with covid" bullshit is OVER as far as I am concerned. Just answer my simple fucking question of "what is the severity of his pulmonary fibrosis and what are his chances on vent or no vent"?

Seems a reasonable question, right?

 

[strollingbones]

i am sorry you are facing this. if he is aware he will make the decision to be ventilated or not. You need to get a dnr and file it. in nc the directives are no longer up to the spouse or child, it is determined by the medical staff.

good luck

 

[sparky]

Seems a reasonable question, right?

but not an easy one in lieu of a HC proxy

condolences .......

~S~

 

[mak2]

i am sorry you are facing this. if he is aware he will make the decision to be ventilated or not. You need to get a dnr and file it. in nc the directives are no longer up to the spouse or child, it is determined by the medical staff.

good luck

What? The family does not decided code status in North Carolina?

 

[Gracie]

One catastrophe at a time, says I. Deal with this current situation, then decide what to do with myself once he is gone.

 

[mak2]

Hospice can make people very comfortable, probably more so than intubated. Has the nursing staff and chaplain spent much time with you?

 

[SweetSue92]

So....more news today. None of it good. MrG and I have to decide which is best for him. In a nutshell....if he is ventilated, he dies while in a drug induced coma, asleep, feels no pain and eventually I pull the plug when he begins to curl up in a fetal position.

Or, not ventilate, he goes to rehab to heal his chest holes from the tubes (3) he currently has once he is released, then he comes home to live on oxygen and hospice to help with his dying that I get to witness.

That about sums up what the past two days have been. MrG says to ventilate, regardless of his high risk. Bad heart, ya know. Collapsed lung that is scarred beyond repair they are trying to deal with in the ICU, etc. Then again, he would have to be alone because they will not let me in since I am unvaxxed and refuse to be...even for MrG. I wanna die when God calls me..not when some schmuck wants me dead via a jab.

Nothing is going to fix his lung. He can live MAYBE a year or so just on oxygen tanks and laying in bed. OR, he can go faster being on a ventilator in a ICU unit and be unaware. He fears suffering and hooked to a machine, hence a ventilator. On the other hand....maybe he can live a semi tolerable life at home with hospice and dies quietly via morphine when the time comes. Decisions decisions.

I told him I do not want to make a decision..or rather, WE should not make a decision until we get a final answer from the pulmonologist in just HOW severe this deadly disease is and so far, we are getting no response. Just mumbo jumbo. So I left a message with the ICU that we need to do a advance directive but cannot until HE tells us the severity of this disease. So far..no response. WTF, already? Can he not SPEAK to us about this? Guess not. MrG is just a body, not a soul, fix it best he can, move on to next patient. NOT! I want some fucking answers and I want them NOW. So in a few hours, I plan to harass the hospital AGAIN, asking the Dr to CALL ME and TALK TO ME, so I can discuss with MrG what the plan of action is going to be. Slow death or fast death. Thats not too much to ask, is it? And this "so busy with covid" bullshit is OVER as far as I am concerned. Just answer my simple fucking question of "what is the severity of his pulmonary fibrosis and what are his chances on vent or no vent"?

Seems a reasonable question, right?

I'm sorry Gracie. Praying for you.

 

[strollingbones]

When i was having surgery...i went to my lawyer and ask for a medical directive...i thought it would name my husband...it did not it gave the decision to the medial staff. so i assume that is how its done now. i did not have time to do much as the directive came the day before the surgery and i remembered thinking how odd that total strangers would decide my fate. i never followed up on it after surgery but it makes sense in a way. neither my son or husband would have any guilt over it i would hope. it was filed with the hospital.

now my husband has had 4 joints replaced.. and they have never ask me anything..but he is in good health...he made all his medical decisions....i simple stepped in when the surgeries were over and he was outta of it for a day or so. plus his last surgery he was pig headed about and said hurtful things to me..but i was never asked my opinion on anything...just sign for the drugs and move on. basically agreeing to take him home and care for him...social services always gets involved...

 

[Gracie]

He has a DNR. But all this is new to us. Nobody told us back in October of 2021 he had IPD or a pretty over stressed heart. Its in his records, but nobody INFORMED us, nor was he ever referred to a cardiologist. Ever. We had no clue. Go to doc for a cough, get MRI and CTscan and blood tests, etc from primary doc....continue on with living. NO CLUE what was building up in his chest. None. Then "xrays show something we are concerned about with that cough of yours. We need to do a biopsy". And from there......what is happening now. Collapsed lung from the biopsy. Right lung, all three sections. Slap him on oxygen, send him home, BOOM...lung falls apart. Oh. Yes. He has IPF is what UCDavis says from their lung specialist. Say what? WTF is IPF? So I have to fucking google it.

Now he is in ICU with tubes coming out of him, and they want an advance directive because he is confused to what is going on. DNR. But that is if his heart goes poof. CPR....if he is not breathing but heart is still pumping. Vent or not vent. No answers. No responses to our questions. HIs..or mine. So nurse navigator talks to us instead but cannot give advice, only options. But no options can be considered until that mother fucking doctor TALKS TO US. And it has to be via phone since I am not allowed in there. Yet, they let me in when they were drilling a hole in his chest for the first tube, so I could "hold his hand". I'm like...wtf? I just came in off the street, am not sanitized, and you are drilling his chest with me standing right next to him? are you fucking INSANE? No telling what is crawling on me, so I stand outside the room. I listen for groans if he is feeling pain, hear nothing. I ask him afterwards did he feel it? He said no, but was glad to get help breathing and never wants to feel that again.

Its been a fucking nightmare and I sit here ranting on a message board and bawling my eyes out while typing because I feel so helpless...and he is relying on me to be strong enough to speak for him since he is just a lump to them in ICU.

I DONT KNOW WHAT TO DO

 

[Gracie]

I need to stay as healthy as possible. If I get sick...we both are lost and at the mercy of...whomever. I have to be at the hospital..OUTSIDE...at 10am to meet the notary lady that is coming to notarize a power of attorney for me...without me present since I am not allowed inside. This is so I can do his finances, etc. Then I have to take that paper to the bank so I can withdraw or deposit monies in his account and take care of financial business on his part. Then I have to get my van out of the repair shop, call yolanda at the hospice place and see if she has advice for me, then harass the hospital for answers they are not giving, then check the bank for his ss deposit and get a copy of what is in there so I can tell Dennis (MrG) what his balance is, yadda yadda. And hanging over my head is him asking ME what I think he should do and me telling him its his choice..I will back him in whatever he decides but both of us not knowing WHAT to decide BECAUSE WE ARE NOT GETTING AQNY FUCKING ANSSWERS. Covid, ya know. Too busy with sick people and he is just an old man with a disease we didn't even know existed until last month.

 

[mak2]

You are being under served by your nurse navigator. I never gave advice either, because everyone is different. But the questions you ask should have been answered and probably several times by now. Perhaps you can call a patient advocate and get a new NN. Also, I dont know if you are religious or not but surely the hospital has a Chaplin service or your church. It is normal to be angry at this point, but you should not be alone right now.

 

[Gracie]

I'm sorry for yelling. I am just....at my wits end, have a non stop headache for a week, have refused to cry until just now becaues yall are all I got now. I lost EVERYTHING these past 6 years and now I am the lone survivor and I DONT WANT TO BE.

 

[strollingbones]

look you have to take care of yourself too...it is hard to do when you are in the middle of chaos...dont you have a son? i would have family come.

 

[mak2]

I'm sorry for yelling. I am just....at my wits end, have a non stop headache for a week, have refused to cry until just now becaues yall are all I got now. I lost EVERYTHING these past 6 years and now I am the lone survivor and I DONT WANT TO BE.

Well, you might be stuck with that. Just make the best decisions you can now and never second guess yourself. There are no right answers, just do the best you can. And hospice should spend quite a bit of time with you right at first

 

[Gracie]

PF Patients Who Use a Hospital Ventilator Die at Seven Times the...

Read about a study showing that pulmonary fibrosis patients who use a hospital ventilator died at seven times the rate of non-users.

pulmonaryfibrosisnews.com

Dr Google is better at answering my questions than the ICU docs. Now I am leaning on recommending to Dennis to come home. Slower death, but at least he may last a bit longer...as long as he is not in pain or scared, and scared he is when he can't breathe.

I have to study on this some more. Please God, keep me healthy enough to do what needs done.

 

[Gracie]

Its 5:12 am and I am going to get dressed for the day. No sleeping now. Wash face. Look sane. Stay strong. Do daily chores of harassing, running, thinking, not crying, being a bitch when needed, ears open for anything that will assist Dennis.

Thanks for the shoulders.

 

[RodISHI]

He has a DNR. But all this is new to us. Nobody told us back in October of 2021 he had IPD or a pretty over stressed heart. Its in his records, but nobody INFORMED us, nor was he ever referred to a cardiologist. Ever. We had no clue. Go to doc for a cough, get MRI and CTscan and blood tests, etc from primary doc....continue on with living. NO CLUE what was building up in his chest. None. Then "xrays show something we are concerned about with that cough of yours. We need to do a biopsy". And from there......what is happening now. Collapsed lung from the biopsy. Right lung, all three sections. Slap him on oxygen, send him home, BOOM...lung falls apart. Oh. Yes. He has IPF is what UCDavis says from their lung specialist. Say what? WTF is IPF? So I have to fucking google it.

Now he is in ICU with tubes coming out of him, and they want an advance directive because he is confused to what is going on. DNR. But that is if his heart goes poof. CPR....if he is not breathing but heart is still pumping. Vent or not vent. No answers. No responses to our questions. HIs..or mine. So nurse navigator talks to us instead but cannot give advice, only options. But no options can be considered until that mother fucking doctor TALKS TO US. And it has to be via phone since I am not allowed in there. Yet, they let me in when they were drilling a hole in his chest for the first tube, so I could "hold his hand". I'm like...wtf? I just came in off the street, am not sanitized, and you are drilling his chest with me standing right next to him? are you fucking INSANE? No telling what is crawling on me, so I stand outside the room. I listen for groans if he is feeling pain, hear nothing. I ask him afterwards did he feel it? He said no, but was glad to get help breathing and never wants to feel that again.

Its been a fucking nightmare and I sit here ranting on a message board and bawling my eyes out while typing because I feel so helpless...and he is relying on me to be strong enough to speak for him since he is just a lump to them in ICU.

I DONT KNOW WHAT TO DO

Gracie. they can possibly make him more comfortable in the hospital unless the doctor gives him a morphine pump. My brother has one at home because of the pain that comes with his heart etc...

God bless you and keep you. Try in as much as possible not to stress.

 

[wamose]

I need to stay as healthy as possible. If I get sick...we both are lost and at the mercy of...whomever. I have to be at the hospital..OUTSIDE...at 10am to meet the notary lady that is coming to notarize a power of attorney for me...without me present since I am not allowed inside. This is so I can do his finances, etc. Then I have to take that paper to the bank so I can withdraw or deposit monies in his account and take care of financial business on his part. Then I have to get my van out of the repair shop, call yolanda at the hospice place and see if she has advice for me, then harass the hospital for answers they are not giving, then check the bank for his ss deposit and get a copy of what is in there so I can tell Dennis (MrG) what his balance is, yadda yadda. And hanging over my head is him asking ME what I think he should do and me telling him its his choice..I will back him in whatever he decides but both of us not knowing WHAT to decide BECAUSE WE ARE NOT GETTING AQNY FUCKING ANSSWERS. Covid, ya know. Too busy with sick people and he is just an old man with a disease we didn't even know existed until last month.

Pray and be strong Gracie. I wish you and Dennis luck and comfort.

 

[Gracie]

I'm recharged...ready to do battle. Wish me luck.

 

[task0778]

I'm recharged...ready to do battle. Wish me luck.

Good luck. Hope you get some answers.