Good morning

[Sepsur]

Good morning everyone. How is everyone doing? @DrARDS @Rgsable @Hikelt @HopefulA @Louisetteb @Angelssavepoppy @Amy0418 @jayniej @Lovetolearn12 @Zaaz @GizWal @Marcita @avnipiro @Tilly1964 @Sidra89 @Naciente @Heartgal151 @NICOLETTE2020 @Mguzman1

[Marcita]

Trying hard to keep the faith... 😔

Been living like this for a month already...

[Sepsur in reply to Marcita]

Yes it’s a long haul - thinking of you

[avnipiro in reply to Marcita]

Hey, just had the doc called my father is still stable no improvements

[Sepsur in reply to avnipiro]

Stable is good

[Marcita in reply to avnipiro]

I'm sorry. It's always a punch in the stomach isn't it? I understand because we were told that a couple of times. But hey stable is better than worsening so that's positive🤞

[avnipiro in reply to Marcita]

Being stable and showing no improvement how long can that last before the Doc give up?

[holibob in reply to avnipiro]

My husband was like that for weeks and they didn't give up on him. It's so dificult when there's no change, it's feels like it's going on for ever doesn't it.

[Marcita in reply to avnipiro]

It's hard to say because looks like each hospital/country have their own approach. I find our hospital very keen to fight for my mom. It's her 30th day in the ICU and they are all supporting her.

[HopefulA]

Thanks for checking in!

Trying to stay postive and we continue to pray.

Dad is stable, Oxygen requirement is still averaging between 55-60%.

They are going to try and put in a tracheostomy on Friday maybe, i hope this goes ahead and pray it is successful with no complications🙏🏽🤞🏼

[Sepsur in reply to HopefulA]

Yes - I know every bit is fraught with hazards. Someone was asking about positive stories from ICU - it is recognised in U.K. that around 75% of people survive critical care.

[Angelssavepoppy]

Thanks for checking in. Not a great update for us today. Dad developed a fever today, so his oxygen requirement went up and he’s now at 100% oxygen on the ventilator. He’s still on pressors for his BP, and needed a couple of units of blood due to the bleed that was caused by the anticoagulants that he is on. His kidneys and liver are still good, and he had an echo and his heart is good. They were initially worried about a PE but it looks like hopefully that is dissipating as the right side of his heart looks okay.

Anybody experience a fever like this while on a vent? I feel like it’s such a setback, it’s so hard to stay positive but I have to have faith that he will beat this and come home to us.

This is such an emotional roller coaster.

[avnipiro in reply to Angelssavepoppy]

Stay strong , he is in the best hands. I will prayer for him.

[Sepsur in reply to Angelssavepoppy]

You must think I’m trying to hog the lime light but I had numerous setbacks along the way, so to start - I came into ICU with avian flu, double pneumonia, strep A, sepsis fast becoming septic shock and multiple organ failure inc heart, kidney & respiratory. 3weeks later I had severe ARDS. Got diagnosed with leukaemia 4th week of coma, 5,6,7,8th week of coma, I picked up VRE, CMV, MSSA, EBV - all are virus which are really dangerous for critically ill people. The week I woke up I contracted glandular fever. Just when my family thought I was getting better, I’d come down with another infection, my wife walked in one day and I was packed with rubber surgical gloves full of ice to make my temperature drop.The next drama is that I started reacting to the medication but that’s another story -

[Heartgal151 in reply to Sepsur]

Hello!

OK here. My dad is still in ICU but he is off the ventilator and dialysis and on nasal high flow oxygen which is coming down. He’s very very confused though, although does have lucid moments.

Hoping to be stepped down from ICU soon. He is officially Covid negative.

He definitely has ICU acquired weakness, can only be put on chair by hoist, exhausts quickly, and has an unsafe swallow. So still on feeding tube.

However, he is alive and improving and for that I am forever grateful!

Sending prayers for everyone still going through the ICU journey.

[Sepsur in reply to Heartgal151]

Great news

Have a look at ICUsteps critical care guide - there are loads of other links on this page too that maybe helpful - icudelirium

icustepschester.org/informa...

[Angelssavepoppy in reply to Sepsur]

Thank you Sepsur for the hope. I’m hoping my dad is a miracle like you.

It’s so terrifying and devastating living this way. I pray so hard that tomorrow is a better day. This virus is so terrible and every time you think there’s a positive day you’re hit square over the jaw with a sack of bricks the next update.

[Sepsur in reply to Angelssavepoppy]

Critical illness is more devastating for the families, I think. I was asleep in a coma, then awake and looked after every second of the day by the kindest and most brilliant staff. ICU is a very calm place, it’s not like the rest of a hospital. Some of the footage on the media, makes ICU out to be a brutal arena, in my experience, it isn’t.

[NICOLETTE2020 in reply to Angelssavepoppy]

My Dad had quite a fever more than once where his oxygen was turned up. The good thing about ICU is that they are so closely monitored that any change is picked up quickly and then they are on it.

[Sepsur in reply to NICOLETTE2020]

Yes indeed, because I was so immune compromised, I picked up numerous infections, it is inevitable. Very scary for you.

[jayniej]

hi all

My dad is day 23 now in ICU

Has the tracheostomy but told he is pulling at this a little so they mildly sedated him

lhas recently had 2.8 litres of fluid removed from his plural cavity on both lungs. Today one drain remain left in as there is a lot of air in the cavity?

Tomorrow they plan to take off the sedation & continue with a different antibiotic to treat his sternal infection.

He needs another operation in a specialist hospital to reconstruct the sternum & a re-wiring is needed from his previous heart op. They want his sternal infection treated first in order to operate!

This could take a few weeks, i just pray & hope nothing else goes wrong now inbetween that time & he does get well enough to go!

He has been through the mill and we haven’t been far behind him!

i do hope & pray for all your loved ones

x 🙏🏻❤️

[Sepsur in reply to jayniej]

Boy hasn’t he just - he must be a tough character to have come through all this. Keeping my fingers crossed for progress over the next week

[jayniej in reply to Sepsur]

Thank you Sepsur

i briefly spike with the nurse this morning & she said he is off sedation now but a little agitated & they are getting a nurse to come to see him for pain management. She said its hard to know what he is saying as he has a tracheostomy. He wears false teeth usually but these are obviously out now and i can imagine its hard to lip read & difficult for him to lip read them as they are wearing masks .. hope they will be able to sort his agitation a little ?

[Sepsur in reply to jayniej]

The side effects of the sedatives, thankfully were short lived for me - so pleased there is slow progress

[Sidra89]

Thanks for asking Sepsur .. today i was shaken to my core.. each day feels like an eternity of heartbreak but still trying to keep my hopes up while praying for a miracle

[Sepsur in reply to Sidra89]

I sorry for all the pain you are going through - miracles do happen

[Sidra89 in reply to Sepsur]

God called my mom Back to him at midnight

[Marcita in reply to Sidra89]

I'm so sorry. My heart with you, I really feel it deep inside... ⚘

She was a fighter and so you were. Big hug. Will pray for you...

[Chanlib in reply to Sidra89]

I’m so sorry to hear! My thoughts and prayers go out to you xxx

[avnipiro in reply to Sidra89]

Im so sorry, my heart is with you, big big hugs and sending prayers.

[NICOLETTE2020 in reply to Sidra89]

Am so sorry and here's a big hug xx(((((()))))))

[Sepsur in reply to Sidra89]

I am so sorry to hear that news. Thinking of you and your family.

[LCharles in reply to Sidra89]

I’m so sorry Sidra May our Father in heaven comfort you with a peace that passes all under ♥️

[DrARDS]

Hey Sepsur,

So my Dad remains ventilated. They are looking at doing a trachy.

This is so hard.

I pray for us all.

[Sepsur in reply to DrARDS]

A trachy is progress towards waking your Dad😊

[avnipiro]

Manage to video call my dad, heart breaking.

They reduced his sedation but his oxgyen level back up to 50% so disappointed. Itnwas reduced a few days ago but increased.

[Marcita in reply to avnipiro]

Don't be disappointed. They are trying to wean his sedation in order to remove him from mechanical ventilation... His body got distressed because he has less sedatives to control him that's why he required more oxygen now. Step by step. It will be slow but steady.

Big hugs! Praying for us all!

[Sepsur in reply to avnipiro]

Mine journey was very similar - I step forward 2 back - keep the faith

[GizWal]

Hi Sepsur, We have had progress with dad - he has had a tracheostomy and the little signs are all pointing to steps in the right directions. He has had his pacemaker replaced, with a permanent one not a temporary one has they had previously intended. They obviously thought he was able to tolerate this procedure. His lungs are showing signs of clearing albeit slowly and his stats are all going the right way. We know it is tiny baby steps, and it is still precarious however it feels like a million miles away from last week when we were feeling so despondent and beaten, with no hope at all. Its amazing how you take comfort in the smallest of steps.

Thanks for the ask. Hope you are keeping well!!

Jo xx

[Sepsur in reply to GizWal]

That sounds really promising - let’s hope this in the beginning of his recovery. For your Dad, the long haul back to a new ‘normal’ is just starting. He will have to be patient with himself too.

[avnipiro]

Day 11, Dads again been stable nothing changed.

[Sepsur in reply to avnipiro]

👍💪😊