How do you get through your days?! I can barley function...
Where do I begin. Myself, fiancé and our 3 boys tested for covid 2 weeks a go. Since the 23rd Jan my fiancé has been in hospital, eventually went on to ECMO on 1st Feb. Just feel like our world is falling apart and I don’t know what I can do. We are all fine now.
We are a very close family and always there through good and bad but it only works that way when all of us work together. He’s only 32, no underlying health issues, never smoked, drank, or did any sort of drugs. I feel so helpless. I have been told not to call ICU as they’re super busy which I understand. I don’t want to take time away from really poorly people including my fiancé. But waiting for the daily update from the Liason officer is torture. Especially when I can’t be there to will my fiancé better and help him from the sidelines xx
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Keepingfaith2021
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I can only imagine how hard it is to sit at home and be powerless to help in anyway. It was suggested to my family to look after themselves. Make sure they ate and slept. Make sure the children & animals were as happy as they could be under the circumstances. The reason they were suggested to do this was that they would need all their energy for when I woke up and eventually came home. They were encouraged to enjoy ever distraction they could because sitting around worrying didn’t help me in anyway.
We are trying to but with lockdown and everything being closed is hard. Especially for the kids. They’re so bored bless them. The older 2 don’t feel like doing school work and that’s fine - I have spoken to their teachers and the head of the school and they are fine with this as well. Although I have back up work books that the boys can do which look like activity books. Xx
Take one day at a time and try not to put any additional pressure on yourself as you are going through so much already.
I tried to keep myself busy by getting out for walks with my little boy (even if I didn't feel like it at the time) and in the evenings I tried to distract myself with some easy watch TV and also took up a simple hobby to keep me busy as it felt quite lonely once my little one had gone to bed.
I tried to get into a routine (which I know is hard if you are having to wait for a phone call and have 3 boys). Each day I saved some photos and videos from the day to a shared drive so that my husband could see them when he woke up. I was also lucky to be able to Skype each day so I would make a list of things to talk about. Maybe you could ask if you could record short video clips to be played to your husband if a Skype call isn't possible. I also wrote a little diary just before bed which helped me to get some of the emotion out before trying to sleep.
Is it possible to ask the liason officer to agree a particular time that they could ring each day so you aren't left waiting all day?
There is a relatives group run by ICU Chester on Tuesday evenings if you want any more support. They are a really lovely bunch and have really helped me through an awful time.
I hope that things start to improve for your family x
As @LeopardGecko says - our relatives group is very helpful - everyone there has been where you are 😊. Your partner is young and fit - this is in his favour.
Hello dear, I live in Manchester can I join the group? As I am really finding it hard to survive each day without crying, as I have 2 boy (2+ & 4yrs old)
I did start sending my fiancé messages and pictures to his phone so that when he did wake up then he could get up to date with what we were doing and what the kids have been doing. We sent pictures to the hospital he was originally at that’s been bought along to Leicester where he’s at. They mentioned FaceTime/Skype but for once he was settled etc. So I’m hoping I can do that. He is only 32 and it just seems so unfair and unjust. Xx. I think the support group would be good especially at the moment cx
My husband really enjoyed looking back at the pictures and videos I had saved throughout his time in hospital so I would say to keep up with that if you can.
I would also say that Skype/Facetime will also be great to do once you can as I am sure he would love to hear your voice. You might want to have a think ahead of time about what you feel happy with your children seeing if you want them to join in the calls. There is a great book for children available on the ICU Steps website for children which I found useful for my little boy.
I look forward to meeting you on Tuesday if you can make it 🙂
I can only echo what has ready been said. Even in the best of times when you are able to be with your partner you would still need to look after yourself for both him and your boys and most of all for you.
I am sweetie, as best I can anyway. I know it’s going to be a long road and even once off ecmo, all being well, recovery doesn’t stop there. By trade I am a sports therapist and I can only imagine his absolute elation with the fact I will have to give him rub downs and physio lol I’ll need all my energy for that. Just at the mo with it all being so rush and new and such a quick turn of events I feel overwhelmed and slightly lost. Lockdown doesn’t help as I can’t get the kids out xx
Thank you so much I have laughed and laughed and been told off by my wife. It just ticked me. My wife trained as a nursery nurse and therefore could only make babies
I can assure you that they do not have a problem with you calling ICU once a day. They used to tell me the same thing but It was too hard for me to sit around and wait for the call. Eventually we came up with a plan to call up between 2-4 and I get my updates then. Also ask for video calls as majority of hospitals give patients family a video call when requested.
Yer they said about the video calls but they would wait a couple of days after going on ecmo before they schedule them in as that’s the most critical time (I know it’s all critical) but this is where they will need to stabilise him. I think just echoing what the consultant said and worrying that I’m taking a nurse away from his side which he needs. Thank you for the advice though I think for the next couple of days I will hold fire and wait and then once things settle down and they’re happy in some sort of routine with him I will start calling. Xx
Hi there, we are going through the same thing with my dad. I have 2 small children and when he was placed on the ventilator I barely could function. I felt numb honestly. My kids were the best distraction and they made me smile on days I wanted to just curl up and cry. I also listened to a lot of music on my earphones. Walks really helped to clear my mind as well. We are allowed to call morning and evening here in toronto, so that’s been helpful. I can imagine how you feel waiting the full day. But try doing something you love during this time. I know it is so so hard, but it will help a lot. Eventually your boyfriend will start to make his recovery and every little step will feel like the best feeling ever. Keep strong!
Hiya, thank you for the suggestions. Music I can’t quite deal with yet as we listen to a lot of music and a fair amount is significant to us. I will do but not quite ready as I know it will open up a flood gate. But you’re right we need to keep busy. I don’t feel I’m in the right frame of mind to be at work (even though I’m working from home) as emotionally I’m drained and anything I have left is for the 3 boys and waiting for the magic afternoon call. Xx
It's so hard trying to get through each day, it's tortuous . When my husband was in ITU, I look back now and wonder what I did. I was in a daze for the first week or so.
I was told to look after myself , I just couldn't. I was told when he comes home you will need every bit of energy , boy they were so right , I really struggled getting him through the first month after he came home .
I like you sent him a message every day, and kept notes of what his treatment was and what happened on that day. I also wrote a blog .
I did eventually pull myself together and when in a routine I was much better and felt much more positive about his outcome.
So much went wrong in our house when he went in, Central heating packed in, oven stopped working and something went wrong in the bathroom, all task normally my husband would deal with .
Omg they say the same to me every day well to keep my strength up for myself and the boys. They haven’t mentioned anything about coming home. It’s always we are open an honest and that he’s been very poorly and he’s still poorly and there are no guarantees. I know this but the fact I’m reminded of it everyday is a tad soul destroying.
I have been messaging him throughout the day when something happens even something generic that normally happens just so he’s in the loop as such.
Because we’ve all had covid too and come through it we are still suffering with the effects of it. Tiredness is the biggest one of them all and actually not having the energy to do anything. I’ve stupidly washed the kids bed sheets 3 times because I keep forgetting they’re in there!!!
They’ll be good for a dolls house by the time I’ve finished!!!
It must have been a nightmare when everything started going wrong it’s just one thing after another. I really wouldn’t have a clue if they went wrong!!!
He was in for months before he came home, but it had taken its toll on all of us. We too had covid and breathing and trying to deal with what was going on was horrendous. We dig deep and find that inner strength as you are doing now.We were in the first wave and I would be told daily the mortality rate is really high ! Towards his second week we got appointed a liaison team , and the consultant was amazing. He was so supportive , he held my hand remotely everyday and explained the terminology.
You are doing amazingly well, you have 3 children to look after too .
I have just seen your update, that sounds settling . I can see you are in the Midlands(ish) , we were in the Birmingham Trust, they have learnt so much about the disease and he is in good hands x
Wow 4 months is a long time, how did you do it???? How are you both now? Yer we are east mids. The boys have been great to be honest. Considering they’re 10, 5 and 3 - the youngest is autistic and many times this week I have said I’d love to be in his bubble!!!! Just to be able to switch off for 10 mins.
Innocence is bliss isn't ? You will manage the 10 mins to yourself soon, and please make sure you do.I look back and think I was just in a daze and functioning, my dad had died several weeks before my husband was taken ill, some days I thought it was just a bad dream.
Our daughter come home from uni and the first couple of weeks she did what I should have been doing . I then realised she was really struggling and also had covid .
We are doing okay, he still has a few issues, but we are grateful for how much e has progressed . xx
Thought I would update you as you have all been fab and I appreciate all the support you have given me.
I had my call (later than normal which started to freak me out) my fiancé is stable again today and where they want him to be. They have said that he's starting to go through to the settling in phase where he will just settle being on ecmo.
He had a little bit of blood in his urine but she said they were clearing that with a flush and not uncommon as he's still on dialysis.
The food intake they've had to change slightly as he wasn't absorbing it as well.
His heart is functioning normally and isn't on any blood pressure medication which is good and shows he's holding his own.
But like always they have reminded me he's not out of the woods and it's a long recovery process xx
First of all you are not stupid. You are going through your own trauma. As an ex-patient I can’t understand what you are going through. My wife still blames herself for abandoning me in ICU and she visited me almost every day.
It’s good news that he is going into his “settling in phase”. In my case the doctors were initially concerned about how ill I was (that’s putting it mildly) but I went into a phase where whilst still being ill there was an acceptance that I would come round but only once I was ready.
Please take the advice of @Leopardgecko and make contact with ICUStepsChester
The relatives group is on a Tuesday evening between 6-50 and around 9pm.
I appreciate it may be difficult with the boys but you can drop in and out whenever you want to. But you do need to make contact for the zoom link. Don’t be put off by the fact it’s in Chester.
Thanks lovely, I think the biggest thing for me is that I can’t be there, I can’t support him in person from the sidelines. Kick him up the bum when he needs it so to speak. Even though we’ve had Covid I suppose it reduces the risk of him catching other nasty bugs that maybe bought in from the outside. But like your wife I’m doing the same blaming myself for the whole situation, going through what more I could have done.
We genuinely haven’t been anywhere because I have the underlying health issues etc. Kids haven’t been to school and I’ve been working from home and home schooling, you can’t help but run it all through your head over and over again. Then seeing walk out of here, he wasn’t in a chair or on a bed or anything to how things are now, its just completely messes with your mindset.
Whilst in hospital he couldn’t lay on his belly like they wanted him to for anything more than 30 mins at a time because of an umbilical hernia he had 2 years a go and laying on his belly pulls the scar tissue. When he was ventilated it wasn’t because he wasn’t able to breathe, it was because he was so tired, frustrated and anxious and because the nurses kept waking him up to get him to go on his belly it just didn’t help. So it got to the point where he became proper distressed and his oxygen dropped, his heart rate went up along with his blood pressure and they were worried he’d either have a heart attack or stroke. Which is why they put him to sleep. And no we’re here!!
But I will drop in - I missed last night as the kids didn’t settle till gone half 8 as we had lot of tears in the past couple of days from our 5 year old. Some tough questions too. Although he’s 5 he’s way beyond his years. His understanding is that daddy needs to be charged up like an iPad would and that he has a special teeny tiny like washing machine that’s cleaning all the blood and making it all nice and new for him. He was happy with that explanation. The eldest is 10 and just very quiet most of the time but then comes and talks when he wants. The youngest is 3 and autistic so doesn’t understand. What I wouldn’t give to be in his bubble for 10 mins!!
I have 5 children one nearly 50 and they all reacted differently. I also have 12 GChildren and they too reacted differently. Complete withdrawal, interest and wanting to visit. One was really concerned he had lost his other grandad to cancer and shortly before I went into hospital his friend’s grandad had died in hospital. Children are more aware than we think and therefore, I think, we should be as honest as possible with them.
My wife has just told me that one of the relatives group don’t come until much later so that they can get their little one settled.
Thank you for that I will have a look. We have had a bad day today. 4/5 days of stability and slight improvement then today he's gone a step back. They think he has another infection somewhere as the markers for sepsis have risen. Also the right side of his heart is enlarged slightly and working harder again. They have given him antibiotics to help with the infection and adrenalin to widnes the arteries etc to take some of the pressure off. They are going to change his catheter as there's blood in his urine still. I did ask 2/3 days a UTI but they said there wasn't any markers to suggest it!!! But it could be that he has got one now!?!?! But he did say that they don't know if that an infection is the case or if its the virus doing it. They are still hopefull but it is a worrying setback. X
As of last night he’s stable again, hearts doing well and no blood pressure meds required, he's settled down into the ecmo machine and he is right where they need him to be at this stage.
Although alot of his oxygenation is occurring through ecmo he's only on 30% oxygen intake through ventilation. The dietitian has reviewed him last night/this morning and they've added (i think she said) prebiotics/probiotics. I kept thinking of that yacult when she was talking about it. I did say for her to tell him it was crispy chilli beef and i know for a fact he wouldn't hesitate in absorbing it all!!
I got a message from the Liason officer from the hospital he was at to pick up some bits. Which I did - TBH it was absolutely everything. The only thing that was missing was his mobile phone and charger. It’s been marked down as being popped in the bag at the general office to be kept in the safe for valuables etc but it wasn’t there. The Liason officer at Leicester said that due to him being ventilated before he went there it was unlikely to have been sent with him but she’s going to check for me.
Tbh in the grand scheme of things it’s the least of my worries just a little annoying as he’s only had it a couple of weeks.
But apart from that and the most important thing is that he’s stable again.
Hi, I know it's not a huge issue, as you say, you may find it went to ITU with him, we were very fortunate we got everything back, and it went to ITU with him. It nearly didn't come out of ITU, we were fortunate a nurse who was supporting us, saw all his stuff and transferred it down to his recovery ward .
In terms of your next post, sadly the ITU journey is some roller-coaster ride and most of us would tell you it's one step forward 2 back some days. Infections are sadly highly common IN ITU.
I know it's easy for me to say, but please don't feel deflated, he has come so far xx
In the grand scheme of things it’s just a blooming phone and it’s the least of the worries. I think it’s just when they say them dreaded words (which I know they have to say) at the end of the conversation after already not so good news and you just feel all that hard work he’s put in is all for nothing. Xx
Another update all, we had 4/5 solid stable days and 2 days with improvements and inflammatory markers had come down. Then today he's gone a step back.
They think he has another infection somewhere as the markers for sepsis have risen. Also the right side of his heart is enlarged slightly and working harder again. They have given him antibiotics to help with the possible infection and adrenalin to widen the arteries etc to take some of the pressure off.
They are going to change his catheter as there's blood in his urine still. I did ask 2/3 days a UTI but they said there wasn't any markers to suggest it!!! But it could be that he has got one now!?!?!
But he did say that they don't know if that an infection is the case or if its the virus doing it. They are still hopefull but it is a worrying setback
Your experience is ( unfortunately) pretty standard. I had numerous opportunist infection even upto the day before I left ICU. In fact I had an ‘infection’ that appeared only to present in the evening. The docs could never quite decide whether it was the leukaemia, result of sepsis, glandular fever or MSSA
Omg that must have been awful. I know they have to be honest etc but it’s just bought my anxiety through the roof again. Had a little cry and meltdown in the kitchen away from the kids. It just seems so unfair that’s all xx
Just give them a call , of course they are busy but they are also very compassionate they understand how hard it is for you and your boys, the hospital where my dad is tells me to call whenever and if they can answer they will, I tend to call morning afternoon and the evening if there ever busy I just request a call back but that's only ever been once, my dad is in there he is also healthy slightly older in his 50s but still fit and healthy my two little ones are in bits he's been there from day one I don't no how to stop the hurt you are not alone x
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