Struggling today: I'm really struggling this... - ICUsteps

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Struggling today

HopefulA
HopefulA

I'm really struggling this morning, can't seem to stop crying and I have to go to work in 15 minutes.

Dad is stable and oxygen requirement 50% but I'm finding it difficult that after a really good week last week where he was on cpap mode and waking up, he is now fully sedated, with paralysing agents and fully ventilated as he is taking too big a breath and they want to control his breathing.

5 and a half weeks and I thought we were on the road to recovery.

Everything else at the moment seems ok, it's just his lungs that are very damaged and scarred, I am so scared about what happens if they can't wean him off the ventilator.

66 Replies
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Hi hopeful I had to reply to you ASAP as you and I are roughly on the same time scale . I had a serious meltdown on Monday and cried my eyes out bad next day was able to calm a bit . Let it go get out as much as you can then you will calm and realise home amazing your dad is how he’s still fighting , and wait for that corner that you can turn together . Sending hugs prayers to you and hoping you get a better update today x

Thank you so much for replying, sometimes even with family support this whole journey can feel really lonely.

I sure hope we have a more positive update today, I keep willing dad to keep fighting!

How's your husband? X

Yesterday’s update was baby steps ? But you know yourself what to us is a big deal to icu it isn’t ? . Your right about family support I have an excellent support group but have my days when I can’t stop crying and they don’t always understand even if they try ? I’m eager to get my update every day but when my phone rings I dread it ! I dare say all of us feel the same ? My prayers and thoughts for everyone going through this , and pray all those in icu now with this horrid virus to be strong as whatever it takes we will all wait for them x

Yes it's very difficult as you want to know what is going on but then feel really anxious about what will be said.

Yes praying with you that all in ICU continue to fight and come back home to loved ones x

Hi hopeful,

I know what a roller coaster this is, my husband has been 6 weeks in covid icu and some days when he seems to be making progress I allow myself to feel positive. But then there’s a setback and I feel sick with worry and panic and don’t know what to do. The journey is very up and down, and the ICU staff are doing what’s best to give your Dad the best possible chance of recovery - sometimes that feels like a step backward though. Remember it’s 2 steps forward, 1 step back, and he will get there.

HopefulA
HopefulA
in reply to Malletus

Thank you, I have total faith in the NHS and they're doing a fab job.

Just praying dad can continue to find the strength to keep fighting and come home to us x

That is very disappointing- but hopefully this is a temporary measure and they have done it to be over cautious

HopefulA
HopefulA
in reply to Sepsur

I hope so, he managed to stay on cpap mode with very little pressure support for a week and 48 hours of that was 0 pressure support so I ak hoping that he needs a small break and then can try again🤞🏼

I'm feeling very down today too. When we think everything is going smooth bam something happens... my mom is slightly better than many of some people's relatives here but she's really struggling mentally and physically. She had dialysis yesterday, was agitated and trying to remove her lines... day 46th for us... no prospective of leaving the hospital. It's killing me... God, how long will it take?

I'm worried for her kidneys and her mental status. Afraid of long term effects of covid...

Sepsur
Sepsur
in reply to Marcita

Recovery from critical care can take months or years - I promise you the time goes much quicker than you think. I’ve been out for 3yrs & 10mnths - the sort of timescale that they said it would take me to recover from 4 months in hospital. Let me assure you I felt well enough after 9months & pretty much back to normal after 18months.

Marcita
Marcita
in reply to Sepsur

It's taking forever 😭

Me and mom we had so much plans for 2020. Covid just took it all away from us...

I'm due to deliver my daughter at any time now and it kills me that most likely my mom will not be able to understand the situation 😔

She was all excited shopping and knitting for the baby...

Sepsur
Sepsur
in reply to Marcita

We will all have interrupted lives, unfortunately

HopefulA
HopefulA
in reply to Marcita

My dad's biggest dream is to see me get married, which is meant to be happening this October.

He was so excited with all the prep. I need him to get better and come home for this, this is why I am sure he has fought this battle for the last 5 and a bit weeks.

I have to believe that he is not going to give up now x

Marcita
Marcita
in reply to HopefulA

We just have our faith and positivity to hold onto... good days and bad days 🙏🏻

Let's keep moving... We will make this 💪🏻

Hidden
Hidden

I hope you hear (I hope we all) hear better news soon. I spent two days ago just in tears the entire day, I could’t even leave my bed. Some days I’ve been out trying to renovate/painting mums garden, that when she does get discharged, she has a nice place to recover and relax. Having some project to do gives me something to focus on.

Your dad has come out of sedation before, he can do it again x

HopefulA
HopefulA
in reply to Hidden

When dad is doing ok I feel so much more motivated to do things otherwise I just do the basics.

You're right, let's hope he can back on track soon.

How is mum today? X

Hidden
Hidden
in reply to HopefulA

Yup. When mum’s oxygen shot up at the weekend I couldn’t focus on anything, just cried and lay in the bed. My days seems to depend on whatever the doctor says - and whether that message is delivered in a positive or negative tone.

Mums doing okay, shes now down to 65% oxygen so shes crept down little by little each day. It’s horrible though, because I’m just expecting things to go worse again at any moment. It feels like I’m in an alert state all day long. It’s so emotionally tiring.

And my mums not really been out of sedation yet for over 4 weeks. A few times they’ve tried but it hasn’t gone well. I’m choosing to believe sedation helps recovery x

HopefulA
HopefulA
in reply to Hidden

That's a step in the right direction🤞🏼

It's incredibly difficult because you want to celebrate the small progresses but feel terrified it will change again and it just is exhausting.

Sending hugs x

I really hope you get some good news soon. He was doing so well. Maybe the doctors are just doing this as a precaution and to give his lungs more time to heal xx

HopefulA
HopefulA
in reply to Olivia2902

Thank you.

The doctor did say not to worry too much about being fully sedated, they want to control his breathing but it took 3 attempts for him to come off the paralysing agent last time so I'm worried and i can't work out why his oxygen requirement won't come down.

So hard xx

HopefulA
HopefulA
in reply to Olivia2902

How is your lovely sister? X

Olivia2902
Olivia2902
in reply to HopefulA

I completely understand why you’re worried about him coming out of the sedation again. But he has done it once and shown how strong he is. So maybe a bit more time for his lungs to recover and next time will be a more positive outcome. Hang on in there lovely.🤞🏻

It’s been a bad few days for my sister. We had a phone call from the consultant earlier who told us that she is using the limit of the ventilator. They have started a new course of antibiotics which will hopefully clear off the other infections. And they are letting us facetime later today so we are praying some reassurance from familiar voices will help her. xx

HopefulA
HopefulA
in reply to Olivia2902

Thanks hun, I just hope his lungs haven't got so stiff that they can't heal...

Fingers crossed the antibiotics kick in and then she will be able to have the strength to focus just on this.

Facetime will be so nice and it defo will help.

Even though dad is now back to being fully sedated we still videocall and talk to him.

Seeing his lovely face breaks my heart but also makes me feel stronger.

He is my rock x

Olivia2902
Olivia2902
in reply to HopefulA

Face time was a bit of a shock to the system. We haven’t seen her for over a month and even though the doctor tried to prepare us, I don’t think any of us were prepared for how poorly she looks.

Hoping we both get some better news today xx

Marcita
Marcita
in reply to Olivia2902

I was also disturbed when I saw my mom. She looked confused, weak and scared. Her eyes were deep opened. I dunno if she's having delirium. Must be very scary for her.

Olivia2902
Olivia2902
in reply to Marcita

It’s just heartbreaking to see them like that isn’t it :(

HopefulA
HopefulA
in reply to Olivia2902

I hope so hun xx

Same here, my grandma was doing fine for the past week- now she’s unstable again. I’m afraid of not being able to wean her either. She underwent a tracheotomy to provide a stable airway just in case the weaning doesn’t help. Have you asked that for your dad?

HopefulA
HopefulA
in reply to JustJessy

Hiya

Yes dad had a trachy done 2 weeks ago and about 4 days later they were able to lift sedation and start to wean ventilator.

All was going well until this Tuesday where is oxygen requirement went up and they had to fully sedate and ventilate again.

They said yesterday he has a chest infection which could be part of the reason he is struggling so i am hoping the antibiotics kick in and he turns a corner.

How long has grandma been in?

Hope you get some good news today x

JustJessy
JustJessy
in reply to HopefulA

It’s been month. And there’s been so many ups and downs which I too believe is just the nature of this disease. But your dad sounds like a fighter, and if he’s anything like my grandmother- he will beat this thing. Praying for their well being, and ours as well. The mental toll this is taking on everyone is no joke. If you need to vent, I’m here.

HopefulA
HopefulA
in reply to JustJessy

Thank you so much, this group is so wonderful at providing support and hope.

My dad is a fighter and I pray that they recover from this and come home to us xxx

Stay strong my friend! Exactly same thing happened with my wife. She is on day 57 of her itu stay! She has slowly turned a corner but there will be bumps in the road. Potential recovery will take a long time as it is a very slow process

HopefulA
HopefulA
in reply to JOSH43

Oh Josh, great to hear she has turned a corner and I hope she continues to recover.

Yes I am going to try and be more positive today, dad is fighting and hopefully the steroids and antibiotics they started yesterday kick in.

Thanks for your message x

Remember that he is being well treated. Deal with what’s happening today and try not to think forward. While he’s being ventilated there’s hope. Don’t forget that.

I’m feeling exactly the same way too. You are not alone and I send a strong and very understanding HUG.

My partner has been in ICU for 25 days. Finally, yesterday he had the trachy procedure however, 10 days ago his condition deteriorated significantly. I could barely function or breathe myself. My heart is still continuously pounding out of my chest and whilst I need to know each day how he is, I also FEAR making the call. When the doctor asks me if I have any questions, yes I do but just can’t bring myself to ask. I’m just taking what they tell me and doing my best to embrace my partner is stable again and being cared for by an amazing and wonderful medical team.

I’m home alone continuously fighting my thoughts. My body shakes from the unpleasant adrenaline surges and venturing outside virtually impossible. I can’t bare this nightmare, day after day after day. I have however found some mental strength from watching the ch4 programme, SAS: Who Dares Wins. I have it continuously playing on my TV truth be told. These ex special forces men have experienced hell during battle and what we are going through is pure hell and a battle. I find myself embracing their shared experiences and how they fought through, what they were thinking and how they overcame their thoughts to succeed. This has helped me enormously. I have family and friends I can talk with on the phone and my neighbours have overwhelmed me with their care, understanding and support. But being home alone and not be able to be by my partners bedside is crippling. I suspect we both will need counselling for PTSD. Xx

HopefulA
HopefulA
in reply to Cally74

Oh Cally, sending you a big hug!

This is a terrible and awful time and all that you have said, I feel like you're describing my feelings.

I have to keep reminding myself stable is good and patience is what is required.

SAS is a great programme and wonderful that it is providing you with some help to try and deal with all this.

I continue to keep everything crossed for all our loved ones and their recovery.

If you ever want to talk, share fears or rant please do message xx

Cally74
Cally74
in reply to HopefulA

Thank you so much HopefulA 💕. Please do message me also. I know i received a message from someone, maybe you?? But I can’t find it now to reply 😔. I’m so sorry.

I’ve not been on here for some time because of how crippled I felt inside. I Just couldn’t function and struggled with my thoughts. But for now the LOVE OF MY LIFE is stable and 🤞🏼🙏🏻. The medical team have said his body has been significantly damaged by the Covid virus -lungs and kidneys. I’m so worried about his quality of life and what his sense of self will be after all this. He was such an active and busy man. A man who has every tool for every job and always there to help others in difficulty. We are just going to have to take one day at a time.

Sending you a big hug too xxxx

HopefulA
HopefulA
in reply to Cally74

Hang in there hun, stable is good and let's hope that tomorrow we hear positive news and like you said we take it one day at a time, will check in on you tomorrow xx

I hope you are feeling more stronger and your dad is doing better. You are not alone. My dad has been in ICU 6 weeks today. The pillar of our family and our world. It’s so difficult because there are so many ups and downs and I can’t imagine what it’s like for you having to go to work, although I hope it’s helping you in some way. At home it’s just mum and me and we have good and bad day’s. Please continue to keep strong and have faith because I’m sure he can feel it. We have sent in pictures and letters and the nurses kindly read them out to him so that might help if you haven’t done so already. I’m also finding watching new series on Netflix etc helps, but also talking about fun times and picturing him home and getting back to normal gives us hope. Keep your spirits up. My heart is with everyone here who’s suffering and in difficult times xxx please let me know if I can help in any other way 💕

HopefulA
HopefulA
in reply to Dolphin011

Thank you!

My dad has also been in 6 weeks today. Dad remains fully sedated and ventilated but he is stable and still requiring 50% oxygen. I am staying hopeful and keeping faith that this will slowly improve as the medications do their thing.

Our dads are fighting so we fight as welk.

How is your dad?

Sending hugs xx

Dolphin011
Dolphin011
in reply to HopefulA

Yes, we have to continue to fight and remain strong. They have been fighting this for 6 weeks now so i know they will get through it!

Dad started to wake up around 6th may. He’s unable to speak because of the trachy tube, but able to understand us. It’s taken a while for him to come off the sedation properly and I’m sure your dad will get there too and soon :) he’s on approx 35% oxygen but it still goes a little up and down. As soon as your dad starts to wake up his oxygen requirements will eventually decrease too because he’ll have more strength. It’s really a case of two steps forward and one back. The meds are tough and especially after them being comatose for so long it will take a while, but they will get there!

I’ll check in tomorrow :)

Hope you manage to get some rest xxx

Hope you are doing alright and your dad is doing slightly better xx

HopefulA
HopefulA
in reply to Dolphin011

Thanks for checking in, dad made some small progress yesterday and they got him off the paralysing agent and on to pressure support cpap on vent, this am they have switched back to a hybrid mode to give him a break as his respiratory rate was low but I am hoping he just needs a little break and then can continue to wean sedation and vent.

Fingers crossed for a postive day🤞🏼

How's dad? Xx

Dolphin011
Dolphin011
in reply to HopefulA

Sounds like small steps in the right direction!! Dad was also switched between cpap/bipap and other modes so don’t be disheartened with the frequent changes.

Dad seems to be doing better, a lot of physio and is awake so he understands what’s going on. They say he’s motivated which is great, just still needs to breath more independently, but we are slowly getting there!

I hope your dads progress only continues 💪

Stay strong❤️ - believe🧡 - and lots of love 💛 Xx

HopefulA
HopefulA
in reply to Dolphin011

Dad had a stable night and is slowly opening his eyes😊

Here is hoping for another stable and good day for both dads and everyone else who has loved ones in this situation xxx💜

Yes, we have to continue to fight and remain strong. They have been fighting this for 6 weeks now so i know they will get through it!

Dad started to wake up around 6th may. He’s unable to speak because of the trachy tube, but able to understand us. It’s taken a while for him to come off the sedation properly and I’m sure your dad will get there too and soon :) he’s on approx 35% oxygen but it still goes a little up and down. As soon as your dad starts to wake up his oxygen requirements will eventually decrease too because he’ll have more strength. It’s really a case of two steps forward and one back. The meds are tough and especially after them being comatose for so long it will take a while, but they will get there!

I’ll check in tomorrow :)

Hope you manage to get some rest xxx

How is your dad doing today?xx

HopefulA
HopefulA
in reply to Olivia2902

He has been reasonably stable, needing bit more suport from vent today but oxygen requirements have been a little lower so 2 steps forward, 1 step back.

Are you ok? X

Olivia2902
Olivia2902
in reply to HopefulA

It certainly feels that way doesn’t it. I hope things continue to go in the right direction for him today. How is lowering sedation going? I hope you are doing ok too xx

HopefulA
HopefulA
in reply to Olivia2902

Hi lovely,

So they stopped all sedation yesterday and this morning he was a lot more awake thank god!

I got to see him briefly on facetime and it's started my day off right just seeing his face!

How are you holding up?

I hope you get some more postive news today hun xxx

Olivia2902
Olivia2902
in reply to HopefulA

I’m so happy for you that you got to see him awake. I will keep him in my thoughts. I will come back on here at some point when things are not as raw to see how everyones loved ones are getting on xxx

HopefulA
HopefulA
in reply to Olivia2902

You are such a lovely person, here if you ever want a chat xxx

HopefulA
HopefulA
in reply to Olivia2902

How's the day been hun?

Xx

Hope ur Dad is making better progress HopefulA!

I haven’t been able to work at all during this saga. Any chance you can get more time off?

HopefulA
HopefulA
in reply to DrARDS

Hello you!

Dad is stable at the moment, we have had a couple of weeks of ups and downs so I am hoping and praying that he continues to take small steps in the right direction🙏🏽

How are you and how's dad?

Xxxx

Sarhj
Sarhj
in reply to HopefulA

Hi, I just read your story. Sounds a lot like what we’re going through with my dad as well. I’m so glad he’s making progress 🙏 may I ask if your dad has been retested for Covid? If so Is he still testing positive?

HopefulA
HopefulA
in reply to Sarhj

Hi Sarhj

So dad was swabbed twice in early may and tested negative both times.

He had symptoms from 29th March and was admitted to ITU on 5th April.

First negative test was 5th May.

How is dad doing and how arr you? Xx

Sarhj
Sarhj
in reply to HopefulA

That’s great! 🙏 hope he comes out of this very soon. My dads been weaning off the ventilator for 10+ days now and still not much progress (very little) but still stable 🙏 they may start the tracheotomy on him very soon.

HopefulA
HopefulA
in reply to Sarhj

Great he is weaning off, is he fully off sedation?

The doc called to update today and said Dad is more alert today but he is a bit stuck on the ventilator so he said it's go to be very slow to get him off the last bit of the ventilator.

His lungs have been very damaged by covid but I'm keeping all🙏🏽🤞🏼 that with some time and as he builds his strength he might be able to wean off.

Fingers crossed the trachy does the trick for your dad xx

Cally74
Cally74
in reply to HopefulA

Just read your update hun xxx. Great to read your Dad is more alert today. That must bring you lots of comfort. Slow and steady sounds a good plan especially as his lungs have been badly damaged by this vile virus. I do wish u could go and hug him as I bet u do but it sure feels on the horizon. Big hugs xxxx

HopefulA
HopefulA
in reply to Cally74

Desperate to hug him and just be with him now but hopefully that day will come soon xxxx

Ferham
Ferham
in reply to HopefulA

It will be, you have had such a long journey, it will be worth the wait . We are now able to call my husband on his own phone, we know the recovery will be an arduous, he is devastated at how much the virus has ravaged his body and mind. I have to keep reminding him he is very lucky . Slow and steady wins the race and it sounds like your dad is doing that. x

HopefulA
HopefulA
in reply to Ferham

Awww that makes me so happy that you can actually talk to hubby.

They have come a long way and a long way to go but that's fine, it'll be worth the wait.

I do still get really anxious that he will deteriorate again and am trying to remain positive but its just so scary with the ups and downs xx

Ferham
Ferham
in reply to HopefulA

I know what you mean, I don't think that anxiety will ever go away now, we will worry forever. My husband contacted my best friend last night and said he is really worried about me, as I look pale . Haggard is a better description :)This week has been a worry regarding the journey ahead and the sheer exhaustion it takes for a fit and healthy man to even be moved to sit into a chair. This virus has depleted every ounce of reserve he had . You will soon be hearing your dad telling dad jokes xx

HopefulA
HopefulA
in reply to Ferham

How lovely that even in the situation he is in, he called your best friend to check in on you🥰

I cannot wait to have my dad back!!

I just hope with some time they can get him off this vent at present they keep saying it's going to be a very slow wean due to lung damage xx

Sarhj
Sarhj
in reply to HopefulA

Off sedation but they’re giving him low dose of fentanyl whenever he seems agitated or in pain. It’s so wonderful that your dad is making progress and being a bit more alert 🙏

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