My mother caught COVID and is on the ventilator -- now what?

[Aliareza, BSN]

So to make a long story short, she didn't get vaccinated and caught COVID in early June. She was hospitalized on the 11th and slid downhill until she had to be intubated. She got a night's warning so she was able to tell us her wishes regarding the decisions we'd likely be facing in the days ahead and to tell everyone goodbye. 

I do have critical care and ventilator experience as an RN but left bedside before COVID so I haven't personally done acute or critical care for COVID. I worked in outpatient testing and an outpatient COVID treatment clinic, so I'm not entirely unaware of the possibilities of long term effects.

Today is day 8 for my mom on her ventilator. She's down to PEEP 13 and fio2 of 55% but that number hasn't moved in a few days. Her chest x-ray showed some clearing of her right lung a few days ago but no progress since then. We've been told she'd have to be maintaining with 40-45% fio2 and PEEP 8 to try to come off the vent and she isn't there yet.

We know that by day 14, they'll want to go the trach and peg tube route if she isn't ready to be extubated. The longer we go, the more things slip (fevers, skin breakdown, delirium) and I frankly don't see her making it to her goal. That leaves us with a very difficult question: do we pull support? She told us that she didn't want to live if she couldn't have a high quality life in which she lived at home independently and could essentially return to work and taking trips and go back to living a normal life. 

Since she's made Some progress, it's hard for me to know whether she just needs more time or if we're dooming her to life in LTAC hell until the next cold comes and finishes the job.

I am in no way seeking medical advice and I don't need anyone to tell me what to do; instead, I was hoping that perhaps nurses who have worked with ventilated COVID patients might be able to tell me about their personal and professional experiences so that I can better gauge the reality of what I'm looking at. I have a decision making conference with her teams and my family on Friday to try and help us make an informed choice for her, and it's one we will have to make as her children since she's single/divorced. 

I know it's likely not a positive prognosis. Life after an extended ICU stay and significant time on the vent even without COVID is often never the same. Any input would be much appreciated. 

[MunoRN, RN]

I'm sorry this has happened to you and your mom, and unfortunately I can't really dispute your understanding of your mom's prognosis as being too pessimistic.

Early on when the thinking was "early intubation", getting intubated didn't necessarily coincide with such a dire prognosis, but these days it's typically a last-ditch-effort, and while a few surprise us and survive, I've never seen anybody get to that point and yet return to anything resembling their baseline lung function and general health and activity if they get sick enough to get intubated.  

At "best", we trach and peg the severe Covid survivors and ship them off to vent farms from which they will never escape.  

Typically what happens is that the severity of the illness peaks at some point and then partially resolves, but lung function then stalls out at a point where they can't ever be liberated from ventilator support.

It's certainly hard to put a time limit on when the potential for a one-in-a-million recovery might occur when it comes to Covid.  The duration of severe illness is so prolonged compared to other acute conditions.  

At least for me, being just under 50, my wishes would be to see where I level off, even if that take a while.  If I clearly stop improving at a point where I can't have a reasonable level of independence, then I'd call it good.

[toomuchbaloney]

I'm sorry you are experiencing this.  This is a difficult thing to do with our siblings. 

[Been there,done that, ASN, RN]

How old is your mom? Does she have any comorbidities?

 

[Horseshoe, BSN, RN]

Sorry about your mom. I know decision-making must be very difficult.

[Aliareza, BSN]

4 hours ago, Been there,done that said:

How old is your mom? Does she have any comorbidities?

 

She'll be 60 in September. She was generally unhealthy, maybe getting into pre-diabetic territory and probably had undiagnosed OSA (my sister and I both told her she needed a sleep study but she refused).

Her biggest issue is that she weighed 330 lbs at 5'4" when she was admitted. She also has a calcified DVT in her leg and probably RA. She was obese most of her life but really let it go over the last five years and ballooned up into morbid obesity territory again. She did still have a lot of quality of life before this but at least for me I know her lifestyle choices were likely going to start catching up to her soon since her dad was the same way and had DM2 and mobility issues once he got older.

[toomuchbaloney]

She's. So. Young. 

[Aliareza, BSN]

1 hour ago, toomuchbaloney said:

She's. So. Young. 

I know ☹️. It's so difficult to see her mind still there and active while her lungs stall out and fail. There is so much she's never gotten to see. She has a new grandbaby on the way via my sister, who is heartbroken that she can't even really see her due to of the huge risk COVID poses to pregnant women. I am going to get married and start a family soon and if she doesn't get through this she won't be there to see any of it. 

Her last wish was that the whole family get vaccinated and that we tell everybody we know to get the vaccine. She deeply regrets her decision not to.

[Aliareza, BSN]

14 hours ago, MunoRN said:

It's certainly hard to put a time limit on when the potential for a one-in-a-million recovery might occur when it comes to Covid.  The duration of severe illness is so prolonged compared to other acute conditions.  

At least for me, being just under 50, my wishes would be to see where I level off, even if that take a while.  If I clearly stop improving at a point where I can't have a reasonable level of independence, then I'd call it good.

That's just it. I think part of us will wonder if we stop now would she have improved had we just given her x number more weeks to let her lungs recover? But I have seen SO MANY families cling to that hope after ventilation and do the trach and peg tube surgery and cling to it only for their parent to only partially recover before the next minor respiratory illness comes along and kills them.

 

It is so hard to lose someone all at once but the nightmare these families don't comprehend is that it's much harder to lose their parent bit by bit watching them suffer and struggle the entire time only to die in the end anyway. I would never want that for myself and I know my mom doesn't either. 

[JBMmom, MSN, NP]

You're right that the struggle is the hardest for patients and families. I can tell you that in our ICU, we have had less than 15% of people that were intubated survive and leave our unit. The lung fibrosis is what seems to be getting people in the end. And the obesity and sleep apnea are much higher risk comorbidities. 

I am so sorry that I would not have a much more optimistic outlook than what you present. My thoughts and prayers are with you and your family. I hope that your mother can make a turnaround. 

[Been there,done that, ASN, RN]

"She told us that she didn't want to live if she couldn't have a high quality life in which she lived at home independently and could essentially return to work and taking trips and go back to living a normal life. " It is unfortunate she was not more specific. I have a DPOA that knows.. take me off the vent and no tube feedings.

Nobody knows if that could possibly happen.  It seems doubtful she could return to a high quality of life. Please let us know the outcome of the care conference on Friday.

Wishing you peace.

 

 

[CommunityRNBSN, BSN, RN]

I’m so sorry.