My dad is currently in ICU he has sepsis and several infections and organ failure. How often do you guys call ICU? I don’t want to bug them

[ren85]

My dad is in ICU almost 2 weeks I call about 4 times a day I don’t know if this is enough not enough to much?

[FamilyHistorian]

Hi

I was a patient before corvid and so my wife / family were in everyday but I didn’t know about what went on.

However I would say you need to do what is right for you BUT why not ask them when is the best time to contact them and how often they would prefer you to contact them. Also you need to make sure that you arrange with the family that there is only one of you making the update calls in any one day otherwise it will be too much.

Finally don’t forget to look after yourself the hospital will look after your dad.

[ren85 in reply to FamilyHistorian]

Hi thank you for replying! I hope you are doing well! Could you hear them when they spoke to you? There is only me calling we agreed for only me to call. A lot of the nurses know my voice when I call now. I am trying to sleeping is the hardest

[FamilyHistorian]

By way of background I was sedated / ventilated for nearly 2 months and I had a trachy with various other complications it took me a long time to come round and not only that the family were called in twice as I was expected to survive. One of the many side effects of being in icu for me is the loss of memory. So taking that into account the family say I responded to them but I can’t confirm that. Other people I know say they could hear. It is also said that hearing a loved ones voice can trigger improvement.

But coming back to you ..... when I came out of hospital I found ICUStepsChester I don’t live in their geographical area but they provide various forms of support via zoom. In particular on a Tuesday at 7 they run a relatives drop in. Every one there has been through or is going through what you are - it helps to talk! Also they do various chair exercises in particular in the morning on a Wednesday and Saturday yoga - not leg behind head sort of stuff. If you are interested in making contact I can pass the contact detail details to you through messages.

[ren85 in reply to FamilyHistorian]

Oh really and you are fully recovered now? I was panicking at 12 days thinking it’s getting to long there’s no real progress he’s been sedated so long they try reduce it and he gets agitated. That sounds like something that could definitely be helpful

Thank you

[1212abx in reply to FamilyHistorian]

Hi. Hope you are recovering. My dad has been fully sedated and ventilated for around a month now. He's had ups and downs. He was positive for Covid-19 when admitted but has recently been tested and now negative and moved to the non covid area of ICU. He was proned for the first week or two and he was having 80 to 100% oxygen. He's now down to 40% and on his back. They did manage around a week ago to lower his sedation (Dexdor) and got some response from him. He's since needed to be back fully ventilated with 40% oxygen. I feel like we have gone backwards but we are trying to keep positive.

He was not expected to make the first few days. There was talk of ECMO during the first few days as well but we've improved past that. All his brain and chest scans were ok (except for expected lung infections etc). It's disheartening that he got to the stage of breathing spontaneously with 30% oxygen but high PEEP and now back to fully ventilated again

Was there a lot of ups and downs for you like this?

[FamilyHistorian in reply to 1212abx]

I don’t think it is a backward step. It’s part of the treatment. They tried to reduce my sedation several times and I wasn’t ready to come round. Apparently I started to come round unexpectedly and I was really grumpy!!!!!

[1212abx in reply to FamilyHistorian]

Ok. I think it's just letting the body do its thing and settle down before they try again then

[FamilyHistorian]

Agitatation - I tried and succeeded to pull various tubes etc out, rip the bedding off and hurt the staff. Apparently they tried to tie boxing type gloves on me to protect me from hurting myself. I have just found that out from my wife!

I came out mid March and I am slowly recovering both physically and mentally. I should point out this is what happened to me others will have different stories but this does seem to be the “norm” what ever that means.

[ren85 in reply to FamilyHistorian]

Yeah a lot of people have said it causes agitation all those tubes and wires and having a breathing tube. I think it will be a long road to recovery

[Sepsur]

I can’t advise you as to how frequently to call, similarly to @FamilyHistorian, I was hospitalised before Covid. I spent 57 days unconscious, a further 2 months in hospital & many months recovering after discharge. My family visited every day, more than once, I know my wife also called every morning when she woke & every night before she slept. Often she would get the late night call to come and say her goodbyes - I probably wouldn’t survive the night. I overcame sepsis, septic shock, severe ARDS, double pneumonia, strep A, avian flu, multiple organ failure, numerous infections, EBV, VRE, CMV, MSSA, HHV6 & glandular fever. I was also diagnosed with a type of leukaemia which I recently achieved remission.

Critical care can be a long old haul - but we do survive & retrieve our lives again.

[ren85 in reply to Sepsur]

My word you have been through it! Glad to hear you are on the mend! They got me in last week to see him as it was his birthday and he was so ill I was expecting a call that night to say he hadn’t made it but a week later he’s still fighting. I don’t know if he has sepsis shock I could ask this. He has double pneumonia and his kidneys lungs and heart are failing. Similar to you. I jus guessed if your organs are failing they won’t get better but your story has given me hope! I call in a morning when I wake, lunch, tea and bedtime.

[Sepsur in reply to ren85]

This forum is full of people who have defied the odds & there is nothing peculiarly superhuman about us - I’m not nor ever have been - super fit. I’ve eaten well & looked after myself fairly well. I remember the consultant telling me that the fact I didn’t smoke had saved my life. I remember thinking that a decision I made in 1993 to stop smoking 40 a day - saved my life. There is a series of good guides on this site - look for the link for the ‘intensive care guide’; icustepschester.org/informa...

[ren85 in reply to Sepsur]

Thank you I will have a look

[Nancy888]

We use to call at least once a day - more often we spoke with someone at least twice a day. It was coordinated around when the lab and X-ray results were available and then, when a doctor would be available to speak to us about the results. Then at night we FaceTimed with her and stayed with her talking to her until we all fell asleep together or the battery died on her iPad. My mom didn’t make it but if I had to do it all over again, I would have called more often and spoke to her more frequently on FaceTime. The stories here brought me so much hope during very dark times while my mother was hospitalized. If these testimonials teach us anything, it’s that miracles exist and to keep the faith.

[Tootle2929]

Hello - my dad had just moved from ICU and my mum called at lesser 3 times each day. It’s so difficult a visits are cancelled - stay strong xx

[ren85 in reply to Tootle2929]

How is your dad doing now? It is difficult with no visits I just try keep myself busy xx

[Tootle2929 in reply to ren85]

Oops that was meant to say at least 3 times dad is up and down to be honest. He’s getting really fed up now too. He’s able to speak to my mum now on the phone which is good. Sending well wishes to your dad. Are you in the uk? We are in Leeds and the ICU staff were all lovely to my mum each time she called up, they appreciate how hard it is being at home and no visits x

[ren85 in reply to Tootle2929]

That’s good he can speak to your mum on the phone it’s gives him and your mum and you a boost doesn’t it! Thank you I am to you to! Not to far from you I’m in Hull. They are they all sympathise with not been able to visit and how hard it must be x

[LeopardGecko]

I used to call once in the morning and then have a Skype call with my husband in the afternoon when I would also speak to his nurse. I never really liked calling late at night as I found it made me more anxious before bed. You need to do whatever is right for you though and I'm sure the staff will be more than happy to talk.

I have found the Tuesday Relatives group on ICU steps Chester to be incredibly helpful and reassuring. As FamilyHistorian said - it's good to talk 🙂

[ren85 in reply to LeopardGecko]

I get anxious at bedtime if my phone will ring I know why. The staff have assured me call whenever I want. I think I might give this support group a go

[LeopardGecko in reply to ren85]

I have my phone with me wherever I go since my husband went into hospital in early August and don't put it on silent at night just incase!

ICU staff are amazing so do what feels best for you. If they are a bit too busy they can always suggest you call back in a little while. They understand how worrying and stressful this time is and it is made worse by us not being able to visit 😔

Hope to see you on Tuesday - they are a lovely supportive group (I've only been attending for about a month).

[ren85 in reply to LeopardGecko]

Hi! Yeah a few times they have said can you call back in 20 mins. My phone is always on me and on loud! Is it via zoom the call?

[LeopardGecko in reply to ren85]

Yes, the relatives meeting is via Zoom. You can get the details from ICU Steps Chester. It starts at 6:50 and ends around 9pm. You can drop in any time.

I always seemed to call when his nurse had just gone on a break or the doctors were just in seeing him!

[Sepsur in reply to ren85]

They are a friendly group who have all been through the wringer & come out the other side 😊

[Ferham]

HI, when my husband was in hospital, March -June, I could initially only wait for a call once a day . They were very often late in the afternoon. The outcome of the calls, would either leave me and my daughter in floods of tears or jubilation on the glimmer of hope. It was a raw and emotional time for all involved and not being able to visit or get regular updates, was incredibly difficult .

Once he was moved out of ITU, the staff were amazing on the recovery ward (AS were ITU) they allowed me to call as often as I wanted to, they knew what we had been through, I would just call morning and evening to check his progress. I felt it was protecting my own mental health , by calling more was too distressing for me,

I too, had my phone with me 24/7 and it was never on silent ,you need to do what's best for you, but please look after yourself .

[ren85 in reply to Ferham]

Thank you I am looking after myself as best I can! I call about 3/4 times a day. How is your husband doing now?

[Ferham in reply to ren85]

He is recovering, thank you . He has heart issues, nerve end damage in his lower limbs and fibrosis, however he is getting stronger week by week. We are very lucky we have an amazing after care team.

[varmenta83]

I used to call 3x per day and it was ok because they told me and it made me feel better hugs for you remember to take care of yourself and get plenty of rest and nutrition so that you are healthy and strong for your dad prayers for him please keep us updated

[ren85 in reply to varmenta83]

Thank you! I have been looking after myself much better then I thought I would

[Videodragons]

You say "the staff have assured me call whenever I want".

They probably genuinely mean it. When I was critically ill in ICU, the consultant thanked my wife for effectively being part of the team that was helping me get better. It sounds as if you are doing the same. Good luck!