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

[subee, MSN, CRNA]

On 7/5/2021 at 10:44 PM, Aliareza said:

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. 

You will have to decide what YOU want to do.  Your mother is beyond any other help.  Can you live comfortably with your decision?  IMHO, her chance for survival is in the single digits and it won't pretty or comfortable for her afterwards if she did live long enough to graduate to long-term vent in a nursing home.  If you do go to the comfort measures only regimen, you haven't done anything except to make her more comfortable and should have no regrets.  I had to fire my mother's doctor because he wasn't comfortable with just referring to hospice and calling it quits.  At least in such a terrible situation I was able to help her die comfortably.

 

[summertx]

On 7/5/2021 at 9:44 PM, Aliareza said:

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. 

From the long term care end, many of our covid patients with preexistng lung conditions have died, but very quickly. Other post covid patients we thought would die, or were on the verge, recovered very slowly, and still have long term effects (ie. total assist with ADLS, now incontinent, confined to bed). Our post intubated patients have sketchy residual weakness but some have recovered. 

[summertx]

14 hours ago, summertx said:

 Our post intubated patients have sketchy residual weakness but some have recovered. 

CORRECTION: I meant STAFF who were COVID positive intubated recovered slowly. Most of the patients didn't even reach intubation (or was unknown), they never returned, expired, or had a DNR. 

[Stringer]

So sorry you are facing this.  There are no words that can convey the agonies loved ones experience.

My most recent related experience with a COVID patient was in a support role for a family as mechanical assistance was stopped for the patient after months of ups and downs.  The patient never left acute care.  I can only say the family members deeply regretted not, "calling it quits", earlier.

I prefer to look at such decisions as a change of focus.  It was the patient who finally, repeatedly insisted that the family allow them to die.

 

[Been there,done that, ASN, RN]

What was the  outcome of the care conference?

 

[SmilingBluEyes]

On 7/12/2021 at 1:42 AM, Been there,done that said:

What was the  outcome of the care conference?

 

I, too, would love to know the outcome. OP I am so sorry you and your family are going through this. Any updates? My thoughts are with you all.

[Crazy B]

I know you are looking for others who have shared in this Covid nightmare. But Please try to remember your Mothers wishes. At least you have done the hard part that not many do, which is to have the conversation of healthcare wishes. You know what kind of life she wants and she is depending on her loved ones to do as she would like, not what "we" would like. I to had to make this decision and I know it was a horrible 5 days; in looking back in the past 6 years her quality of life was shattered and the Peace that I saw on my mothers face after everything was D/C'd Is the most beautiful memory I have. All the best to you on this difficult journey

 

[Aliareza, BSN]

On 7/12/2021 at 2:42 AM, Been there,done that said:

What was the  outcome of the care conference?

 

She took a sharp turn for the better within about 36 hours of that care conference. One lung started to clear up and her vent settings were able to be turned down enough that she qualified for a trach + peg and LTAC. 

We did the surgery that Monday and she had a really good few days of progress until her PEG tube came unsituated during a turn. Not horribly uncommon given her weight so we went the CVL + TPN route until she could be re-evaluated via surgery for another PEG tube, which at this point she was entirely unsedated and awake and agreed with the care she was getting. 

She was working with PT and OT, getting stronger, able to pick letters to communicate with us and write with a big pen to practice, and be out of bed for about 30-60 minutes a day. LTAC was on the horizon. Then her trach just came out all of a sudden, 6 days after her surgery. No reason for it that we could see and we were there. She was sitting up on the side of the bed and it just... came out.

She was immediately emergently intubated and we thought she would code. Her sats dropped into the 60's and stayed there for a few minutes before the vent brought them back up into the 80's and 90's. Surgery said she needed a longer trach (the ICU team was pretty upset to see she had a standard length when she had essentially no neck to speak of and it should've been obvious she needed a longer one because of her weight) and they'd order the part overnight. It took 4 days to get there and then they pushed her surgery one day so she ended up on the ventilator again from Sunday through Friday, between 5-6 more days. 

 

She never recovered from that. She started swelling up and her heart rate increased. She started dropping very quickly on her oxygen when we'd try to turn her. I've seen enough ICU patients die to know those are all the signs they won't come back from the vent. Her heart was now failing. We pulled care that Monday and let her go. 

[NRSKarenRN, BSN, RN]

I'm sorry to hear this news and the loss of your beloved mother.   Letting go is the hardest experience for a child or spouse to go through.  May your memories sustain you in the days ahead.

[Horseshoe, BSN, RN]

Wow, such up and down days. Condolences on your loss. Sounds like you did everything you could for her.

[toomuchbaloney]

I'm so so sorry...

[emtb2rn, BSN, RN, EMT-B]

My deepest condolences on the loss of your mom.