Mom (65) with COVID off ventilator after 16 days, what to expect?

[GiaFaith]

My mom (65) just got extubated yesterday after 16 days on ventilator. She has a history of high blood pressure and currently has a blood clot in her arm which I am very concerned about. She is being treated with anticoagulants and they say they are monitoring it. Is this a successful treatment? I am also wondering what to expect after extubation and being fully sedated for 16 days? She is currently doing well breathing on her own with just nasal prongs at 4L of oxygen and all organs stable but she is still very drowsy and deconditioned and weak. She cannot talk and doesn’t seem to be all there but doctors say she is passing all of the neurological tests so they will not be doing any scans. I am worried how long it will be? does your voice and brain function come back?

[Twash]

I am so sorry to hear what you and your mom have been through. But I am happy she is off the ventilator. It will be a slow process for your mom to regain her prior mental functions. She will be very confused about what happened to her. She may confuse her dreams with reality, and may not understand the depth of her illness for some time. You will need to be patient with her. It will help to keep a diary/journal of what happened, so that she can read it. Remember to take care of yourself, too.

[Sepsur]

It’s difficult to imagine the degree that we de-condition. It is possible for a person to loss 40% of their lean muscle in the first ten days of intubation. This includes muscles needed to breathe deeply ( diaphragm) & vocal, heart, eye muscles etc. My resting heart when leaving ICU was 130. I’m normally around 53. My eyes got tired easily, my breathing was shallow, although I needed much more help than your Mom. I couldn’t talk but that was down to a trachy. When eventually I was strong enough, my voice was barely a whisper.

With the right physiotherapy, I got back to normal but over many months.

I also suffered ICU delirium which occurs with about half all ICU patients.

The fatigue is difficult to comprehend as is the brain fog and forgetfulness. All ‘symptoms’ have decreased over time.

[GiaFaith in reply to Sepsur]

Hi Sepsur! wow you have definitely gone through a lot. Glad you have been able to recover after all of that. You were not kidding, recovery is going to be slow! Did you experience a painful cough after coming off the ventilator? My mom has been having one now for a week and some days it sounds worse than the day before...is this normal?

[Sepsur in reply to GiaFaith]

Yes and for a long time after iCU - it became less painful but has never fully gone away.

[FamilyHistorian]

Hi, this time last year at the age of 72 I was in ICU and in total was sedated / ventilated for near 2 months following pneumonia and a cardiac operation. There is no normal as we all react and recover in different ways. It took me a long time to come round, I had no voice as I had had a trachy, I was fed by tube, I lost a tremendous amount of weight which was both fat and muscle and consequently I was very weak. I had hallucinations which I can now manage. I have lost my memory from about 2 months before I went into ICU, I have no memory of ICU and now on a day to day basis my current memory is much better. I do chair exercises both physical and yoga 4 times a week via zoom and I belong to a support group ICUStepsChester. I’m much stronger now and I have put too much weight back on.

The most important thing is that you look after yourself, the hospital will look after your mother.

And yes I was on anticoagulants for 12 months fo be prepared for very bad bruising.

[GiaFaith]

Thank you so much for all of your replies! I stumbled upon this group looking for hope and it has been comforting hearing your stories. My whole household tested positive and I also ended up in the ICU for a week at the same time as my mom but luckily just needing oxyflow mask until I got stronger. My recovery alone has been difficult and taking care of myself even more given the stress. I can only imagine the slow process for my mom as she also suffers from arthritis. I am hopeful and so thankful she has made it this far so hopefully we are moving in the right direction. I have learned things in the ICU change every minute and it is one step forward, 2 steps back so praying we are looking up from here 🙏🏻

[FamilyHistorian in reply to GiaFaith]

I too have RA for 40 years. They may stop some of her RA drugs as they can effect healing. It appears I now have pulmonary fibrosis caused either by methotrexate or pneumonia (or corvid) (ICU trauma) so although I restarted the methotrexate it has now been stopped while further investigations are done

[Anuur44 in reply to FamilyHistorian]

Hi FamilyHistorian. I noticed you got PF. My mum got diagnosed with it after covid. She’s still on ventilator over 6 weeks now. They did say if she does make it she will be on full time care and never be able to breath without oxygen. Is this the case for yourself?

[FamilyHistorian in reply to Anuur44]

Hi Anuur44

The quick answer is no! But!

For me this all started in late November with pneumonia, possibly sepsis and then a heart op. It’s even suggested I might have had early Covid which I tend not to believe as no one as far as I am aware caught anything from me. When I came out of hospital I had a dry irritating cough which gradually got worse over the months. It was put down to trachy/ ICU cough. Over the months it got worse and I think even my GP was worried. I have never had an X-ray followed by a CAT Scan so quick. The diagnosis was NOT cancer but PF. I am now waiting for an appointment with “respiratory medicine” I have chased them once but I have RA and cardiology appointments in 10 days so will start chasing then.

My breathing has deteriorated so i have bought an oxygen reader and my levels vary from 86% to 95% so not too bad and at least I can be quite specific about the change.

So that is where I am now. Being taken off methotrexate does have issues. And I have also been told that the scan can’t differentiate between pneumonia and covid.

[fairydale1]

Anticoagulants are very effective in treating blood clots. They will do regular checks on her blood clotting status as well. It can take a while for them to come around. I think it was a couple of weeks for my husband, and then he was cognitively fine.

[GiaFaith]

Thank you everyone for your replies, everything is so new to me and it helps being informed. My mom is still doing okay 3 days after extubation but has encountered some problems. She is not able to pass the swallow test and her voice is still very weak. How long did it take to be able to swallow again without aspirating?

[Ferham in reply to GiaFaith]

Everybody is different my husband was quite lucky here, he passed within about 3 days, however I do know of someone who was several weeks before he passed it . My husband voice still hasn't really recovered and can't raise his voice .

[FamilyHistorian in reply to GiaFaith]

It really depends on what you mean passing the swallowing test. I had to do exercises with ice chips for about 4 weeks, then I was allowed sips of water, then flavoured water and then wonderful thin soup. I got anxious when they came to test me and cocked the test up. Or at least that was my story. When I transferred to my local hospital I was upgraded to slop - baby food and yogurt. Once home I didn’t get SaLT follow up so took the risk of experimenting with different food. I have been signed off now but still have to be careful, a chocolate brownie initially was a definite no no; rice is ok now but I have to be carefully food with dry crumbs as they can irritate . Lettuce is still a no no it doesn’t break up too well and is tacky.

My wife says my voice is back to normal however I did have a distinctive laugh and that has gone but I have a laugh. I found that yoga breathing and chants helped to strengthen the muscles.

It takes me much longer to eat now and I always make sure I have a drink nearby so that’s not a bad thing. Oh! Choc brownies are ok with cream.

Once I was home my wife was very strict she used the booklet explaining the diet levels as the bible and if I coughed when having a new texture I was banned from that until she thought I was ready.

[GiaFaith in reply to FamilyHistorian]

Thank you for the information! what a lengthy process even to just swallow. These are challenges I would have never thought about. My mom has been upgraded to baby food so signs of progressing, but she is very impatient and wondering when the tube will come out- it has been a week now. Just needs a little patience!

[FamilyHistorian in reply to GiaFaith]

Definitely. Patients can be quite cunning and will do anything to escape!!!

I was on tube feed for about 3 months and in fact it wasn’t until my very last day that the tube came out. Mind you I did pull it out a number of times both when unconscious and conscious. Not all staff were proficient at putting it back in. In the end it was bolted into my nose. There was talk about me having a peg in my stomach to feed me but I wasn’t keen. The other problem was that my drugs had to be administered through the tube and liquid versions weren’t available so they had to be ground down which use to take the nurses nearly an hour each time

I did loose about about 6 stone whilst in hospital. I have regained about 4 stone after 9 months

[GiaFaith]

Wow what a rollercoaster it has been. My mom is slowly recovering but I am still worried about her long term lung damage. The hospital said they will not be doing any scans because they base it off of her stats (right now she is on 3L oxygen and doing okay) and if she is doing well they do not do scans to see damage. Any idea of the long term effects on your lungs after covid and 16 days on a vent? pulmonary fibrosis? scarring? I feel in the dark with my moms recovery since they refuse to do any tests. She has also been having arrhythmias that they are monitoring which worries me. I am looking for hope that the lungs will recover but the more I read the more discouraged I get 😔

[Ferham in reply to GiaFaith]

HI Wonderful news she is recovering . The answer is they honestly don't know if the damage is long term. My Husband was on a vent for a long time, he has pulmonary fibrosis now due to covid. He TLCO results were low too. They won't do any more scans until March now due to the volume of x rays and exposure to radiation. They don't know if the lungs will ever recover , the great news is he isn't breathless when he walking etc .

[GiaFaith in reply to Ferham]

Yes I guess we are all in the dark! that is the hard part. The only CT scan they have done on her lungs was when she got admitted, so absolutely no idea the shape of her lungs even after coming off the ventilator. A good sign he is able to walk without being breathless! Lets hope the lungs heal over time.

[Ferham in reply to GiaFaith]

I have seen about 10 x rays/CT scans , the first one when he was admitted was difficult to look at and I found it really upsetting (maybe to soon) then a week later the next xray was much worse, his lungs were heavily consolidated, it was like a net curtain, the virus had took it's toll, the next couple of CT scans were all very similar. It really did takes month for the lungs to clear, he has some damage/shadow and initially they were unsure if it was a clot or something else more sinister, we were relieved it was fibrosis. Your mum has a long road of recovery ,and not everybody has ended up with scarring. My husband was one of the longest on a ventilator for covid in the hospital he was in. Since then sadly some more patients were in longer, but in the first wave he was initially the longest . He has suffered other damage but we tackle it together and celebrated Christmas being so grateful for the things we normally take for granted .

[DrARDS]

Hi Covid123,Sorry about the delayed response! I’ve PM’d you.

[avnipiro]

So sorry to hear what your mother going throught. Reading she is out of the coma and breathing unaided is brilliant, what you will expect next is she will be very weak and will need to learn to talk, chew and at the same time she will be very confused due to the powerful medication. Does sound like she on the right road, just be paitent as this is a very very slow process .

[Summerhope]

Hi. Just seen your post as signed up today. How is your mum now? My mums situation sounds similar but shes 73. She was extubated 9 days ago after being on a ventilator for almost 2 weeks for pneumonia caused by a hospital aquired infection after beating covid. She's just been moved yesterday from ITU to a ward and I've been really concerned as though her speech has improved in the last week so she can be understood better now after the vocal cords probably being a little more healed, she is still quite delerius and confused. She's on a low amount if oxygen now, 3l via nasal cannulas and on iv antibiotics due to another infection and sliding scale insulin as she is diabetic. She seems to be getting a little stronger physically though still super weak and can do very little with her arms and is still in bed all the time. I think physically she is making progress and I know the physios and speech therapists will be working with her re swallowing and speaking etc. But my main concern right now is the delerium. It's quite upsetting to see / hear about and makes me very concerned about whether she will ever return to a normal mental state. I've been trying to do all I can to help her from afar ...daily facetime calls in ITU and visits every 5 to 7 days as I'm not local to the hospital, have along journey and have a 4 year old to look after too. The new ward doesnt have an iPad and mum isnt with it enough to look after her phone or even hold it so my communication with her has suddenly gone down at a time when I feel she needs as much contact with us to help ground her and reduce the delerium.

Is your mum any better now? Is she out of hospital? I hope things are better. X

[GiaFaith in reply to Summerhope]

Hi Summerhope, so sorry to hear about what you are going through. What I can say is have patience, it does get better! My mom is now back home with us and slowly improving every day. It took her around two weeks to fully come around - I remember the first week after she was extubated was the hardest because she didn’t want to talk to anyone and didn’t know how to work her phone. The hospital would set up the ipad and she would just shake her head and say no and wanted us to leave her alone. Once she started coming around, it was much better. She was also weak and couldn’t hold her phone even once she was doing physio, but her strength slowly came back.

Hang in there, it will take time. She was removed from oxygen by the time she came home (3 weeks after extubation), but her lungs were not in prime shape when she was released and 2 weeks later we had to send her back to the hospital to drain fluid out of her lungs. I know doctors are doing everything they can, but make sure they check her lungs before she leaves the hospital. Those will take time to recover, but have faith, it will get better!