Mother on Ventilator, I am making the Decisions...

11,545 Views | 38 Replies | Last: 2 yr ago by Charpie
scottimus
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AG
Long story short. Mother (60, obese) is an immigration processing nurse in South Texas. She either contracted Covid, there, or from her sister at home. They live together and both went to the hospital. They both still have a lot of life to live.

She went in just over a week ago, and 3 days later consented to being intubated as she felt she could no longer breath. She is a nurse of 40 years and asked me to do everything medically possible to bring her back.

Her lungs look terrible. CT Scan I saw was like those worst case scenarios you see online. Nurse said extreme fibrosis. She suffered acute kidney damage as well during the ordeal. Her lung collapsed, but they were able to re-inflate is with 2 chest tubes and upping the ventilator pressure. That has been stable for 3 days now. They were proning her but stopped until the chest tubes are removed.

All that to say, her current condition is "very stable" but on 3 life support systems (lungs, heart, dialysis). She is being given steroids and antibiotics but nothing else I am aware of. I don't know if I should ask for any other treatments.

My nurse friend advised me to start working on ECMO with a lung transplant if she wants to have a normal life later.

Any advice or experience on where to go from here would be appreciated. I, certainly, am not done fighting for her and am will to go to the furthest extent to save her. I have talked to her about her patients many times, and she would, certainly, do what ever it took to save them.


Suppose I was an idiot. Suppose I was a member of congress. But, I repeat myself.
Marcus Aurelius
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I am sorry. Sounds like all the appropriate heroic measures are being taken. ECMO would be next step if they can't oxygenate her. I have had no one make it to lung transplant. There are case report of that with younger pts. Very difficult.


Sorry to say - but in my experience since March 2020 - I have seen no one with that scenario you describe survive. Kidney failure is a particularly ominous marker with covid. We are giving tociluzimab much earlier in disease course and I believe it is making a difference. It has no effect on pts at her stage/timeline.
Infection_Ag11
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AG
First, I'm so very sorry you're going through this. Unfortunately it's a pretty common scenario in the ICU, and it sucks every time.

With respect to her outlook, from a purely medical perspective based only on what you've provided, her prognosis sounds pretty poor. Do you know what her ventilator settings are? (Percent oxygen, pressures, etc?) Her age, comorbid conditions and dialysis requirement make her a relatively poor ECMO candidate in my experience (though I'm sure our resident critical care docs can provide more insight on this topic, and ECMO is bery facility dependent in terms of who they offer it to). I will say I have only seen one patient get ECMO and then later make it to transplant, and they we're much younger and didn't do well after transplant. Lung transplants are notoriously the worst as far as outcomes go in SOT, and it's debatable whether these patients ever have a "normal" life.

The steroids are good and really the only thing that clearly gives some degree of benefit even at this stage, not sure if she needs the antibiotics but statistically most of these patients don't have concurrent bacterial infections unless they've acquired them in the hospital after the fact. If the nephrologists have any hope of her kidneys bouncing back, they might discuss with the other physicians how sure they are that she needs those as many antibiotics can and often do worsen renal damage. She's almost certainly too far along in the disease course for remdesivir to help, and her dialysis requirement precludes the use of this anyway. They could try an interleukin inhibitor such as tociluzimab (though the data on this is mixed and hardly anything conclusive as far as benefit, she's really far along in her disease course, and many pharmacists don't like to use it in dialysis patients), her dialysis requirement also generally prevents us from using the JAK inhibitors (and these are really only studied when given concurrently with remdesivir in earlier disease).

The CT findings are standard fair in such severe COVID cases and lag way behind clinical status, even if the patient recovers their lungs look like crap for at least 4-6 weeks and often much longer. It's often tough to tell how much permanent lung damage was done until much further out in the disease course, as most of the CT findings represent acute changes due to the infection. If she's only a week into hospitalization (and presumably no more than a couple weeks out from symptom onset) it's still likely too early to say what her chronic lung function might be if she were to recover. Again, Marcus and the other CC docs can probably talk about this more in detail. I haven't seen anyone with disease this severe at that age do anything better than be able to CPAP/BiPAP via trach full time.

All that to say, steroids are good, maybe have a specialist look into how necessary the antibiotics are, but this is most likely just a matter of seeing if she improves enough to wean her off the ventilator. I do not expect she will recover base on the in do provided if you want an honest opinion. At two weeks or so on the vent if she can't come off they'll start talking to you about palliative care/terminal extubation vs tracheostomy placement (if her oxygen requirements and pressures are low enough), so just be prepared for that. I personally have not seen anyone with that age/obesity/degree of illness/time frame recover fully, and the few who survived remain trach/dialysis dependent and live at long term care facilities now.
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dermdoc
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AG
Prayers sent.
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hamean02
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Im not a medical guy but Im praying for you Scottimus.
scottimus
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Thank you all for the perspective and prayers. Know that I am reading more intently than ever in my life.

I don't think she necessarily needed to be intubated...rather I think she was afraid. She called the nurse stating that she felt like she couldn't breath and had anxiety. I was told, earlier, they were giving her an anti-anxiety script at one time. I feel like she panicked and the Doc offered intubation to which she consented. This gives me hope that her lungs could still possibly function. I would check on her oxygen levels and they were always in the lower to mid 90s except when they would change positions.

Based on the timeline, we think the initial ventilator caused her lung to collapse? Does that happen? She had an XRay upon admittance and her lung was not collapsed at that point. We were told by nurses that they could not get the settings correct on a ventilator, and they switched machines shortly after that. The next morning showed an XRay with a collapsed lung. We will look into the current ventilation settings and get report back.

She has two chest tubes due to the collapsed lung. Can she be awake with 2 chest tube inserted? I believe she is on antibiotics because they want to prevent infection due to the tubes. No other infections exist that I am aware of. Should antibiotics be lowered to help her kidneys? Lessen the strain?

Another consideration we are discussing is whether or not we should pursue getting off of the ventilator sooner rather than later...to prevent dependency. Her oxygenation levels were maintaining around 94% in the hospital with the non-rebreather. If in fact her lung collapse was caused by the ventilator, should we try to get off that and go back to the CPAP if possible - again to prevent ventilator dependency?

Suppose I was an idiot. Suppose I was a member of congress. But, I repeat myself.
Charpie
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Amigo, I'm praying for you.
88planoAg
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I'm hoping that at the very least you are able to be with her in the hospital.
bay fan
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S
I am very sorry for your pain. You will find the right path to honor her as best you can.
Gordo14
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Not a medical professional, but a family member needed a vent for a non covid related reason... My experience and discussions with medical professionals and contacts emphasized the importance of getting off the vents as soon as possible. The longer a patient is on a vent the worse the long term outlook typically is (quality of life outcomes is what I am talking about). The ICU is very difficult on the body - particularly on a vent.

Wish you and your mother the best. I know this is a particularly tough place to be and yhe decisions you'll have to make will unfortunately be uncomfortable no matter how it goes.
Jabin
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Horrible situation. Praying for you & your mom Scottimus.
Gilligan
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AG
Prayers sent!
Capitol Ag
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Prayers sent for your mom.
94chem
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scottimus,
It sounds like some pretty knowledgeable people, both professionals and those who have had first-hand experience, are all telling you the same thing, and it seems to be agreeing with what you're thinking. Sometimes you just need the peace to know that you are making the best choice, and whatever happens is in God's hands. I mean, it's all in God's hands, but sometimes he sends people along to give us wisdom and comfort. At this point, I would meet with her main doctor, express your concerns and desires, and see if he/she agrees with you. If yes, then do what you need to do.
94chem,
That, sir, was the greatest post in the history of TexAgs. I salute you. -- Dough
Kvetch
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AG
Request Zyesami (aviptadil)
Infection_Ag11
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I suspect his mother is not at a facility conducting a trial on aviptidil, but even if she was her multi organ failure (especially with one of them being renal failure) and time on the vent would generally exclude her from them.
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robdobyns
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AG
Leronlimab is a monoclonal antibody that is an immune modulator.

Call Scott Kelly MD at CytoDyn at 360-980-8524
Ask him if your mother can get it under compassionate use.
Scott is a good guy and will respond ASAP.
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robdobyns
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https://www.sciencedirect.com/science/article/pii/S2589909021000174

Paper on Leronlimab and ECMO patient.
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Orlando Ayala Cant Read
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OP, do you have an update? Been thinking of you.
OasisMan
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Has to be on antibiotics due to a concurrent bacterial pneumonia, probably zoysn or cefepime, unlikely interfering with the kidneys, vanc would be renally dosed and levels monitored -- I would not ask them to stop or lessen the antibiotics and would assume that the crit care docs knows what they are doing

She likely has ARDS and it will be tough road to get thru--
I've seen it happen, but as pointed out above multiorgan dysfunction due to covid unfortunately is tough to get out of and a lot remain minimally responsive

Now, I'm on the inpatient side, so I don't get to see the longer term outcomes of those that choose trach/PEG & vent facility
Infection_Ag11
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Unfortunately, research from multiple institutions has shown that the vast majority of inpatient antibiotic administration for COVID patients is unnecessary (up to 80% in some instances). This is true even in critically ill intubated patients. The act is anyone with worsening pulmonary infiltrates, ongoing fevers and who remains critically ill is getting antibiotics even if all that can be explained by COVID.

And Pip-tazo, while lower on the ladder of beta-lactam nephrotixicity risk (lower than say, nafcillin for instance) creates a robust synergistic nephrotoxic effect when combined with vancomycin. This can be even in the absence of supratherapeutic vanc levels. At 72 hours the combination actually has comparable rates of AKI and acute renal failure as full treatment dose aminoglycoside therapy. I much prefer cefepime/vanc (Flagyl of anaerobic coverage needed, which it almost never is).
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OasisMan
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I can appreciate abx not working on covid

But unfortunately we see bronchs in covid pts growing bacterial pneumonias too,

How common, it's lesser, but it's there
Infection_Ag11
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They definitely do, these patients are as susceptible to VAPs and HAPs as anyone else. If someone is growing a new pulmonary pathogen from a bronch that's obviously justified.
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Marcus Aurelius
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OasisMan said:

I can appreciate abx not working on covid

But unfortunately we see bronchs in covid pts growing bacterial pneumonias too,

How common, it's lesser, but it's there
I can't recall any active COVID pt being bronched since 3/2020. Maybe a couple. Too high risk of transmission. Maybe at some facilities now with vaccines. But I have not seen any bronch data from these pts at my hospital.

Could be wrong but I suspect similar situation across USA.

As far as superimposed bacterial infections, we have relied more upon non invasive tracheal aspiration, sputum cxs, etc. As well as procalcitonin.
scottimus
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Howdy All,

Thank you for the thoughts, prayers, and knowledge shared, here.. This is the worst post I have ever had to type...Unfortunately, my mother passed away last Tuesday due to Sepsis. She is no longer sick and perfectly healed.

It happened rather quickly that morning with her blood pressure dropping following with cardiac arrest multiple times. When her heart stopped the third time, they could not resuscitate.

I don't know if I should look into it more, but what sucks is that I am pretty sure she beat the Covid part. I fear the tracheostomy and peg (feeding tube) may have been the culprit. She caught another infection along the way that turned to Sepsis. It truly is a battle when you see the wounds these patients undergo for a month straight. The worst part is that I watched as her body would heal, the wounds were healing. But alas, you cannot see inside.

Her lungs were the biggest problem from the beginning and had cleared up by the time the Sepsis occurred. She went form a non-rebreather mask, to a CPAP, to a Vent in about a 2 day period and was intubated at her own consent. I took over after that. I think they caused the collapse of her right lung with the initial ventilator and switched to a different one a couple of days later.

After about 2 weeks of battling the Covid and a collapsed lung, 2 chest tubes later, they were able to stabilize the lungs and did not see any more collapsing for over a week. The nurse practitioner had already given up after the 2 chest tubes and the multiple collapses...but it came back surprising all.

For the last week straight, she was stable, receiving dialysis, and her x-rays showed clearing lungs. They placed a trache and peg as we were beginning to discuss moving her out of ICU. We were looking at rehab centers and they began waking her up from the Paralytic and Sedative. She would move and yawn, but due to the acute kidney failure, it was taking a while to get the drugs out of her system.

The last 3-4 days, they began ventilator trials and lowered the vent to 45% oxygen with a PEEP of 5 and allowed her to "breathe on her own" for about 3 hours a day. Everyone was very surprised with the progress as she outlasted 7 other patients that weren't as lucky in the Covid ICU.

I really am at a loss of how this happened? One procedure too many? Dirty facility and practices?...I don't know. Maybe I am looking too much into it.

One minute we were planning to bring her up to a facility in the Woodlands or close by and the next morning she was gone.

Is there a way I can look at all the data associated with this case? I just find it frustrating that, basically, when they switched Nurse Practitioners (one came back from vacay), all of this occurred.


Suppose I was an idiot. Suppose I was a member of congress. But, I repeat myself.
Charpie
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AG
First of all, I'm so so very sorry. She was still your mom and you loved her and were a good son to her. God has her now and she's no longer suffering. None of what I'm saying is going to make you feel better right now.

As far as the rest of your story, I hate to say it, but it does NOT shock me at all. I guess what is REALLY shocking to me is hearing that she was under the care of a nurse practitioner and NOT a doctor after all of that.

Please email me at username @ aggienetwork.com if you just need to vent. I lost my dad 8 years ago as a result of crappy medical care after a damn tooth infection in the Valley. Just reading what happened to you make my blood boil all over again.
redcrayon
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AG
I'm so sorry.
Aston94
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Sorry for your loss. Peace be with your Mom.



"Do not be afraid. Have Faith."
PJYoung
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AG
Condolences and prayers for you and your family.
Matsui
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Condolences
RGV AG
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So very sorry boss. My the Lord's serenity and peace be with you and your family.
Marcus Aurelius
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scottimus said:

Howdy All,

Thank you for the thoughts, prayers, and knowledge shared, here.. This is the worst post I have ever had to type...Unfortunately, my mother passed away last Tuesday due to Sepsis. She is no longer sick and perfectly healed.

It happened rather quickly that morning with her blood pressure dropping following with cardiac arrest multiple times. When her heart stopped the third time, they could not resuscitate.

I don't know if I should look into it more, but what sucks is that I am pretty sure she beat the Covid part. I fear the tracheostomy and peg (feeding tube) may have been the culprit. She caught another infection along the way that turned to Sepsis. It truly is a battle when you see the wounds these patients undergo for a month straight. The worst part is that I watched as her body would heal, the wounds were healing. But alas, you cannot see inside.

Her lungs were the biggest problem from the beginning and had cleared up by the time the Sepsis occurred. She went form a non-rebreather mask, to a CPAP, to a Vent in about a 2 day period and was intubated at her own consent. I took over after that. I think they caused the collapse of her right lung with the initial ventilator and switched to a different one a couple of days later.

After about 2 weeks of battling the Covid and a collapsed lung, 2 chest tubes later, they were able to stabilize the lungs and did not see any more collapsing for over a week. The nurse practitioner had already given up after the 2 chest tubes and the multiple collapses...but it came back surprising all.

For the last week straight, she was stable, receiving dialysis, and her x-rays showed clearing lungs. They placed a trache and peg as we were beginning to discuss moving her out of ICU. We were looking at rehab centers and they began waking her up from the Paralytic and Sedative. She would move and yawn, but due to the acute kidney failure, it was taking a while to get the drugs out of her system.

The last 3-4 days, they began ventilator trials and lowered the vent to 45% oxygen with a PEEP of 5 and allowed her to "breathe on her own" for about 3 hours a day. Everyone was very surprised with the progress as she outlasted 7 other patients that weren't as lucky in the Covid ICU.

I really am at a loss of how this happened? One procedure too many? Dirty facility and practices?...I don't know. Maybe I am looking too much into it.

One minute we were planning to bring her up to a facility in the Woodlands or close by and the next morning she was gone.

Is there a way I can look at all the data associated with this case? I just find it frustrating that, basically, when they switched Nurse Practioners (one came back from vacay), all of this occurred.



You could request an autopsy. Sounds to me she had a nosocomial superinfection and succumbed. Due to weakened organ function secondary to covid. I am sorry.
scottimus
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AG
Do you think I need an autopsy? Cameron County does not do them, looks like I would need to go to Corpus for it.
Suppose I was an idiot. Suppose I was a member of congress. But, I repeat myself.
scottimus
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AG
Charpie said:

First of all, I'm so so very sorry. She was still your mom and you loved her and were a good son to her. God has her now and she's no longer suffering. None of what I'm saying is going to make you feel better right now.

As far as the rest of your story, I hate to say it, but it does NOT shock me at all. I guess what is REALLY shocking to me is hearing that she was under the care of a nurse practitioner and NOT a doctor after all of that.

Please email me at username @ aggienetwork.com if you just need to vent. I lost my dad 8 years ago as a result of crappy medical care after a damn tooth infection in the Valley. Just reading what happened to you make my blood boil all over again.
You know, I was in the Covid ICU a lot. Almost a daily basis at times. I knew every single nurse, shift change, and looked at all new records in person with the nurses and nurse practitioner.
Interestingly enough, she had a doctor listed on her charts and x-rays, but I was told that the Covid-ICU (Valley Baptist Medical Center) is managed by NPs. The Docs gave orders, but everything I saw was all NPs doing the work...chest tubes, intubation, main lines, PIC, peg, etc.

Never met the doctor once.
Suppose I was an idiot. Suppose I was a member of congress. But, I repeat myself.
Charpie
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AG
That seems wrong. A classmate from high school and fellow Ag is a hospitalist at Doctors Hospital in Edinburg. I can reach out to her if you'd like.
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