My husband 37 days in ICU and profound ICU weakness - ICUsteps

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My husband 37 days in ICU and profound ICU weakness

Bigyellow profile image

My husband 62, cyclists, runner, squash player, weight trainer, canoeist, climber and overall fitness fanatic got Covid 19.On 21/3/20. He was admitted to hospital with ARDS.On 25/4/20 and was put on a ventilator. Over 3 weeks later was given a trachaeostomy. He has had a stroke. repeat infections, failing kidneys, high sodium and we lived on a rollercoaster. When they reduced sedation he had not woken up 10 days later. EEG showed very abnormal brain function. A doctor told us he would not wake up and after an MRI they would bring us in for end of life. The MRI showed the stroke to be small and his brain to be otherwise normal. They decided he needed more time to wake up. On 23/4/20 he opened his eyes. He can now nod a little and give a little shake of his head.He cannot move or talk and it is hard to assess his understanding though he seems to recognise us on face time when he is not too tired.He is making slow but steady progress on ventilator weaning.His tests show his ICU syndrome is about as bad as it gets. If he makes it out of ICU he will have to go to a rehab unit and no one knows for how long or how much function he will regain.Like so many others we have gone through this in lockdown without the support of our extended families and unable to visit. The fight just to get the phone answered and some information was horrible. We could go 24 hours between updates while my husband was fighting for his life. He has been in ICU 37 days now. We are able to face time which is a comfort and gives us a chance to talk to his nurses. When so many have died we are very grateful my husband is still alive but we feel traumatised and broken.

17 Replies

Your husband followed a very similar trajectory to me. I believe my level of fitness - (I didn’t do half of what your husband did) pulled me through critical illness. The 57 day coma & further 33 days in ICU took there toll on everyone.

I couldn’t properly use my hands & fingers for 3-4 months - at first they had totally atrophied - because of my trade, I had weirdly muscular hands ( according to my daughter) - critical illness seemed to dissolve all my muscles - leaving me unable to move or do anything for myself.

It took months to rebuild my strength - they say it takes 10-14 days to recover from everyday in hospital.

‘Broken’ does not even begin to describe the deep emotional, physical & mental trauma that critical illness has caused in our family - after all, my illness was unplanned, this devastating storm came out of a clear blue sky.

We were broken but not busted.

Bigyellow profile image
Bigyellow in reply to Sepsur

Morning Sepsur. We are trying to work out what kind of Rehab unit he will go to.Will it be a Neuro unit ?

Sepsur profile image
Sepsur in reply to Bigyellow

Hi @Bigyellow - I’m sorry I can’t answer that for you. Just encourage him to do as much physio as possible. If you can try and record what he manages each day - I became very disconsolate with my progress. Weirdly, being in a coma disconnected my sense of myself. 3 days before being in a coma, I was skiing black runs in Austria - I woke up unable to do anything and with no sense of the passage of time. I became very frustrated by my incapacity - be aware your husband may go on a rollercoaster himself now. It is hard for the families to appreciate, but in many ways, the emotional rollercoaster has only just begun.

Keep positive and look after yourself - you will need the patience of a saint. We are all changed for ever 😊

Sending you a big hug. I know how you feel. Mom is also at the hospital with Covid. She's having a hard time coming out of the sedation though she can breath on her own and doesn't require life support anymore. Just a lil oxygen on a mask and a catheter. Still she's not really responding to commands and showing signs of conciousness but she's awake.

Wish I could just hug you! My dad (65 year old avid cyclist) is also in the ICU with covid, on a ventilator, similar complications (secondary infection possible bc high fever again, blood clots in legs, cardiac arrest during emergency surgery). We are in the same boat with one update per day, dreading the sound of the phone ring. It’s torture. We can’t be together as a family (I have two sisters and my mom is 5 hours away). I guess I am just trying to say that I somewhat understand what your family is going through, and it’s awful.

There are many people on this board that have ICU recovery experiences that give me so much hope. Even in the face of impossible odds. He will get through this- and you will too. It might take a long time, but stay strong and positive and remember to take care of yourself because in order to support him, you need to be strong. Sending you a hug.

This is a hard situation for all of us - as my Dad is going through the same thing. We can’t do anything but to wait anxiously for phone calls from the Doctors - the day gets longer every time. All we can do is pray and hope for the better.

My dad is also in ICU for nearly 3 weeks now and is now on tracheostomy to wean off, but last night we just found out he’s got temperature again so they took him for an MRI scan today, as he’s not waking up as well when they turn the sedation off.

I know it’s hard but we just have to be strong for them.

Praying for you and your family.

I'm so sad reading all these stories we are all in the same boat, it's horrendous, the one call a day we get fills me with dread . The only thing I would say, is your husband is in the best place with the best doctors in ITU supporting him 24 hours a day . Covid is an unknown beast and for the very ill, it would seem recovery is a very slow process. You are in my thoughts and I hope you start to see further progress .

We are in the same situation. My husband has been on a ventilator for almost 5 weeks and had a tracheotomy about 10 days ago. He almost didn’t make it, on day 10 we were allowed to go in to say our goodbyes, they were so sure they were discussing bereavement service and death certificate. So it’s incredible he is still with us but we don’t know yet what the cost of that will be. He has been off sedation over a week and has only woken briefly to open eyes (but can’t focus), nod and stick his tongue out although that was a few days ago. The rest of the time he is glazed. They may do an MRI but also said it could be down to the drugs - morphine as well as the sedatives they give them at night - so are trying to change them. They have also said when they are as ill as they can be like my husband it can take weeks to fully wake. Recovery will be slow, excruciatingly slow and rehab years. He is also unlikely to be as he was. He is so weak he cannot move anything but his head. It’s so distressing and agonising, not being able to see family or go and visit, at least visits would give the days purpose. Instead we just live waiting for that one daily phone call and not knowing what time that will be. It’s cruel and the only thing we can take comfort from is that we are not alone, there seems to be a number of patients in the same boat. It makes it harder when you do see others recover and leave ITU quicker but I’ve been told I can’t compare with others. Hoping you get some positive news soon x

Marcita profile image
Marcita in reply to RockRunner

Living the same... the pain is terrible. I hope for brighter days for us... not being allowed to visit my mom is what kills me the most... I'm sure our presence would make her heal faster.

RockRunner profile image
RockRunner in reply to Marcita

That’s what I said to the consultant, I’m sure they would make more progress if we were there each day, it would also give our days purpose than just waiting for a call. The whole thing is so cruel :(

Chanlib profile image
Chanlib in reply to RockRunner

We were allowed to zoom the hospital and see my dad for the first time in 7 weeks yesterday and it really helped us as a family as well as my dad...he was being more alert and turning his head to look at us.

If you can...I would strongly advise asking the doctors if there is that possibility of zoom/FaceTime x

I’m a RN myself and I’m going through a similar course in the ICU with my brother. I’m baffled how disconnected the hospital staff are with the no visitor policy. They seem complacent with not having any families physically there or even giving reports to the loved ones daily. Also the phones ringing and no one picking up is so unacceptable to me and I would spend hours trying. As a RN I would one thousand percent try everything in my power to include the family. It breaks my heart. My brother is able to talk with his trach and today he told me some nurses are mean to him. On top of dealing with the illness we also have to endure unimaginable pain of disconnect and separation from our loved ones. Heartbreaking. We have to do better!

Bigyellow profile image
Bigyellow in reply to Amy0418

Hi Amy the cruelty of this situation is beyond belief. Can you tell me how your brother is able to talk with the trachae ? is he weaned and the trachae capped ?

Amy0418 profile image
Amy0418 in reply to Bigyellow

He was able to talk with a speaking valve his trach nurse put on. He was able to during weaning off the vent. Now he's hook up to oxygen through the trach collar and keeps the valve in at all times.

Bigyellow profile image
Bigyellow in reply to Amy0418

Hi Amy, my 27 year od daughter is called Am,y. Richard is doing well He has not moved his left side which is the side he hasdthe stroke but the doctors say this side is weaker and may need longer. he has learnt to move his right arm as far as his face and he can move his toes. He is doing well on his sprints now and seems to understand what is said to him and shakes or nods his head.

Amy0418 profile image
Amy0418 in reply to Bigyellow

That's great progress! It's literally one day at a time. This time last week my brother was in such a different condition now he's sitting up talking everyday on his IPad. He can't use his hands yet so I have the IPad set to automatically answer his FaceTime.

Amy0418 profile image
Amy0418 in reply to Bigyellow

How is your husband doing?

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