Hi All
So dad has had a better week this week and is more stable, needing less oxygen, awake but still ventilator dependent.
He has had a couple of setbacks due to infection and when I spoke to the nurse today she said his temperature was slightly raised so they will monitor but I am worried it's the start of another infection somewhere.
Has anyone else experienced this? Infection after infection?
Thank you
A xx
Yep as you have seen on my post my husband had 3 ! So glad your dad had a better week been thinking of you, sending prayers 🙏🏼and hugs x
Thanks for replying!
Yes I have been following your updates, your husband has been putting up a fab fight!
Dad has had 2 infections so far, I guess I'm just worried that if the raised temperature results in another infection, will they end up sedating him again??
The last few days of him being awake and responsive has been amazing and I just want it to continue 🤞🏼🙏🏽
You’ve been so brave and dads fought so hard , it really is a roller coaster isn’t it . 🙏🏼🙏🏼for everyone going through this xxx
Yes unfortunately. Last 2 weeks he had 2 infections to fight. Yesterday he has a collapse lung and pleural effusion.
Yes VRE, MSSA, CMV, EBV & glandular fever 💪😀
One of the first things they do when you enter ICU with an infectious disease - they test you for everything.
I entered hospital with strep A, influenza A double pneumonia & sepsis
Your story is amazing Sepsur, gives me lots of hope.
Thank you!
Well I’m glad it does - I’m also nothing special - if you ask my family, I am a stubborn human being.
I also was a premature baby born in 1964 11 weeks early - I was lucky to have been born in Bristol, the only city with a premature baby unit at the time.
I’ve been fighting to survive from my first hour 😳 - I have no idea if this is relevant to my survival.
Dad was also given antibiotics on a few occasions to fight infections. However, the last time when both his temperature and inflammatory markers were slightly raised it didn’t amount to anything THANK GOD 🙏💛
Glad to hear he’s making steady progress 💪
Xxx
Oh that's good to hear, I'm hoping this doesn't turn into anything too🤞🏼
How is your dad doing? Xxx
I’m hoping for the same!!!
Dad has been doing well, especially the last week or so 🙏 still on the ventilator, but able to talk very clearly with the speaking valve and physio is going well 💪
He knows exactly what’s going on and it’s a joy to be able to hear him speak ❤️
I’m not asking many questions now when I speak with the doctors and nurses as it’s all going in the right direction!
Praying for all our loved ones 💛
Keep me updated 💪❤️ Xxx
Oh that's so lovely to hear, so happy he is doing well!
How long after did they fit a valve in for your dad, what kind of things did they have to consider before doing so?
I am wondering at what point dad might be able to have one xxxx
Thank you!!!
So, the speaking valve in his case is just temporary and practice for him. From my understanding (because I still sometimes get overwhelmed with medical info), he’ll only be able to speak when he’s off the ventilator and the trachy is removed.
He woke up on 6th may and has been using the speaking valve since 20th may.
Honestly, as soon as you hear your dads voice your heart will explode with happiness ❤️ I hope he gets there very soon!
What stage is he at now? How awake is he?
Xxx
Oh it must be so wonderful.
When we call dad, we can see his lips moving as if he wants to speak so yes I really hope he can have one soon!
So dad has been off sedation fully since Wednesday 20th May and is awake and able to respond to commands with his eyes and little nods and shakes of the head.
He is still ventilated with trachy and they reckon it will be a slow wean as he still requires quite a bit of pressure support.
His oxygen requirement is slowly dropping so 🤞🏼 this all continues.
Is dad weaning off ventilator nicely? Xx
Oh that’s great to hear!!
They say he’s slowly easing into his weaning, but still have no idea when he’ll be released from the ventilator. I think in his case it’s been a little slow so I’m hoping in the next week or so 🤞
Otherwise, he was able to stand up unaided with a walking frame for a few seconds and his psychology assessment went well so slowly but surely he’s getting there 💪 so I think the stronger he is the less ventilation support he’ll need!
Xxx
Wow that is amazing that he is managing to stand up, how lovely!
Yes I have been told it's going to be a very slow wean for dad as his lungs were badly damaged by the virus😔
Still even if slow as long as he can keep well enough to slowly chip away, we will take that🙏🏽🤞🏼
Are you UK based? Xx
Yep, dads lungs also badly damaged so it’s a slow process, but they are getting there and the fight in them is second to none 💪❤️🙏
We are based in central London and the hospital have been beyond incredible! Can’t wait to hug them all 🥰 where are you based? Xx
Yes i think the strong will and determination our dads have will get them through this!
We live in North West London but dad is at Charing Cross hospital in Hammersmith.
Working in the NHS makes me a little biased perhaps but I do think we have such an amazing healthcare system with some amazing nurses and docs as well as other as teams such as the physios💜💜
Couldn’t agree more!!
Dad is in Chelsea and Westminster and they’ve be incredible ❤️
Prior to covid, dad visited Charing Cross numerous times for scans, ENT and even had surgery there and they were beyond fantastic!
I know they are in the best hands xxx
Chelsea and West is a fab hospital!
I just spoke to the nurse to say goodnight and she said dad has had a good day and he has been trying to raise his arm and wiggle his toes as requested!
Antibiotics have stopped now and he hasn't spiked a fever today but CRP Markers are raised however she said as he has no symptoms they aren't too worried at present so fingers crossed it doesn't turn into anything🤞🏼
Wishing our dads and everyone a postive start to the week tomorrow xx💜
It all sounds pretty positive so everything crossed!!
Being able to raise his arm is great!! Once dad was able to do that it was only a short matter of time before he could do more :))))
Keep me posted xxx
Hey, How's dad doing? X
So glad you messaged as I was thinking about you last couple of days!!
Dad is doing very well thank god 🙏 he managed all day without the ventilator and just the cpap mask 💪 the plan is to hopefully remove the trachy on Saturday! He’s making good progress and the doctors are happy! He’s not not sleeping and needs sleeping aid and still weaning off the morphine and hearts meds, but we are chuffed and couldn’t be any prouder!!
How’s your dad?? I’m praying he’s also making positive improvements 🤞 hoping you were able to speak with him 🙏💛 xxx
Aw yay! Super proud of your dad and very happy for you all😊
My dad has been ok, stable however hasn't slept for the last 3 nights and last night he spiked another fever!
His oxygen requirement has creeped back up to 40% whereas he was at about 28-30% up until yesterday afternoon so I'm keeping fingers crossed we don't get a set back.
Weaning is slow but steady and he has a bit of hypoactive delirium.
Keep me posted on dad, great great news xxx
Your journey with your dad sounds like my husbands, thankfully the delirium eventually cleared, the nurses kept saying it would, it's hard to believe it when they tell you this. You think they have been through enough, Covid leaves them a very different person. We are now laughing about his delirium and his random outburst. My husbands oxygen level also kept fluctuating, temperature always spiking . We are now at the next phase of recovery .
That is really useful to know and gives me hope that dad will hopefully be able to continue taking steps albeit slowly in the right direction.
They started him on antibiotics last night so hopefully this will sort out any infection that might be coming on.
Lovely to hear your hubby is doing well and look forward to hearing more about his progress xxx
Sorry for the slow reply!! How is your dad doing now??
Dad got his trachy removed today and is so far doing really well!! Still being fed via the tubes and still has a few meds, but is now able to speak all the time and breathe by himself with just a little pressure support here and there!
I’m hoping your dad is doing better and his fever has passed? Let me know! Lots of love and hugs xxx
Ah that's great to hear your dad has had trachy removed 😊
Dad is doing good, they further reduced his ventilator settings and he is tolerating well.
Today they used a hoist and sat him on a chair and apparently he really liked it and didn't want to go back into the bed!
He is getting a little frustrated as he talks but we can't hear him so I'm asking them whether they could add a valve in for dad as think it will help lots!
So happy your dad is making wonderful progress, keep me posted xxxx
Hey, how’s your dad doing? Xx
Hiya,
He is doing well thanks 
He managed 3 x 1 hour sessions off the ventilator yesterday which is great. Slow and steady but hopefully we will get there.💜
How's your dad doing? Xxx
Wonderful news , i'm so delighted to be reading this - slow and steady x
Thank you!
Such a relief to finally see some light at the end of a long tunnel.
Can't wait for him to get a speaking valve as think he is getting frustrated!
How is hubby doing? Xx
So so, I'm really not happy with the care, or I should say lack of care he is getting. The staff are fabulous, but he is in so much pain with his legs and feet, he is just on paracetamol for it . I spoke to the assistant manager on Friday, she told me it would be reviewed on Tues when a Doctor comes in, I said It's Friday and it's too long to wait. I then spoke to a nurse who managed to get a prescription for codeine yesterday, but they were short staffed so asked could I drive into the city centre to collect his prescription from the out of hours service, then collect the meds . I did obviously, he needs the correct medication for nerve endings. I have called the doctors that cover this practise to discuss the doctor that will be reviewing him tomorrow, they have said it's a senior nurse . I'm now waiting for a doctor to return my call . Due to the pain he is in he is finding any physio extremely painful and exhausting as he can't sleep .
I feel for him - I know exactly the place he is at. I had the good fortune to have my wife at my side helping to motivate me. All you can do is encourage him - maybe jot down what he is able to do - so that when he gets frustrated - you can tell him how much he has improved 😀
We have been doing that and telling him how proud we are of him, it's the pain he is that is hurting us , if we were with him we could rub his legs and feet and reassure him .
Well having ended up in hospital again myself at present because of just that - my sympathies. My legs went into such painful spasm that I passed out from pain and cut my head open - (probably a side effect of leukaemia treatment). If it is cramping that he is getting - magnesium helps me.
Oh no!
I totally understand your frustration and so so hard when you cannot be there to help him with the pain.
I hope you have managed to speak to a doctor??
I know you're trying to encourage him already so that's definitely going to give him support and I hope the codeine provides him with a bit more relief until you manage to speak to a doctor on actual plan to help with his pain xxx
I got a clinical nurse, she said the home won't even allow dr's in, she is looking at prescribing him some different medication for him. On the plus side he manged to stand for about 30 seconds today with the pyshio's unaided . It absolutely exhausted him though. So proud of him xx
Awww that’s brilliant! Well done him 👏💕
Dad is still doing well. Had a bit of a slow weekend with physio as he spiked a bit of a temp. Hoping it remains normal so they don’t have to give antibiotics. I just get the feeling he is expecting and hoping things move a bit faster, but doctors and nurses happy so far and we are too ❤️ Xxx
Fab news and 🤞🏼 that the temperature doesn't come to anything!
So they put a speaking valve in for dad for a little while and the nurse videocalled me from dads phone😃
Was so so lovely to hear him talk but in doing so I realised that he still has some delirium and confusion.
I asked if I should send him some you tube videos to watch and he said to me he has no time to watch as he needs to wash the dishes. Bless him.
I am hoping it passes soon but how did you guys manage delirium?
Did you go with that they said or correct them/remind them of where they are and things? Xx
Aww he’s defo getting stronger if he able to have the speaking valve .
It’s so nice hearing them speak isn’t it ?
My dad right on end of his weaning has picked a chest infection up 😢 so having little rest till tomorrow then start the weaning again it’s so frustrating!
It’s so warm these last few days I feel really sorry for them stuck in hospital in bed .
Hope this week is more positive for everyone x
Oh bless your dad, let's hope the antibiotics kick in asap!
Yes my dad doesn't do well with heat so I asked the nurses to not tuck him in too tight at night as they said he wasn't sleeping well and i thought it might be as he is hot. So last night the left his blanket off and he fell back to sleep
Let me know how dad gets on xxxx
I think the antibiotics are kicking in now as he’s bringing up alot more secretions, he’s does not like coughing though nurses said he panics . He’s never suffered with his chest or smoked and had a good set of lungs before all this being a fireman in the past.
The days are dragging and he’s fed up , he knows what he has to do to get home but just finding things difficult at the minute .
Mentally he’s getting there reading a book yesterday and watching tv , a few weeks ago he wasn’t doing that so hanging on to all the positives.
Suppose this is another bump in the road with ICU X
Yes so so hard when you have another bump but he is so strongnand determined so am sure he will find that motivation very soon!
Wonderful he is reading and watching tv, i think my dad is where your dad was a few weeks ago where he doesn't want to do anything but as he had the speaking valve today, i realised he still has moments of delirium so might be why...
I'm worried about what dad's lungs will be like at the end of all this and how much will self heal.
Sending love xxx
They all get there in their own time , nearly 9 weeks now but suppose it feels longer for us as dad was alseep for nearly 5 of them.
So much uncertainty with this covid and how their lungs will be effected long term , it’s so worrying x
We have a similar timeframe, 9th week today and dad has been awake properly last 2 weeks and it's just such a relief and lovely to see him awake xxx
The delirium will pass, it's so disturbing when you see them like this . He sound's like he is doing great, so pleased for you xx
Ahhh I’m so pleased you are now able the speak with him!!! Thankfully, dads delirium was minimal and his memory is pretty great 🙏
I’m pleased to say his temperature is back to normal and he was discharged from ICU on Monday afternoon!! He was a little panicked at first, but has settled in quite nicely in his new ward.
Physio is going great and he’s able to eat 👏
How is your dad? Did you ask about the delirium? I’m hoping it’s only a short matter of time before he’s also discharged from ICU 🙏
Xxx ❤️
Awww I am so happy to hear dad is discharged from ICU that is just lovely! How nice that he can eat, any chance of seeing him soon?
Dad is doing well in terms of time off the vent, he did 2 x 5 hour sessions and they are doing longer sessions today but he is very confused.
He wanted nurse to videocall me today so I was so excited and then he basically told me off for not coming to collect him, he thinks he is in India at the moment and that I am being difficult. Bless him, really hard to see him like this. Yesterday he just kept asking us for a biscuit😢
I really hope the delirium passes soon as it breaks my heart but I'm super proud of the progress he is making💜
Xxx
Ahh your dad is making great progress!! Before you know it they’ll take the trachy out!!
It must be really tough with the delirium, but hopefully he’ll overcome that obstacle soon too 💪
Yes, dad being able to eat and drink is a huge boost and will give him that extra strength!
Still no visitors allowed though :(( but we are hoping he might even be home in a few weeks time 🤞🙏❤️
Keep me posted on his delirium and trachy xxx ❤️
Yes fingers crossed he is home soon🤞🏼 I am so pleased for him and you and the family🥰
Will defo keep you posted on dad xxx
Stick with it, it will lift soon enough , lovely that he thinks he is on holiday somewhere . My husband's delirium consisted of lot's of holiday destinations too . x
Yes hoping it passes soon, he just keeps telling me to come and take him home and then gets frustrated with me when I tell him he needs to stay in hospital and quickly get better😔
Did your husband used to do this? How did you manage it all? Xx
Yes he did, on "one of the holidays we were on " I had stolen the money to take him on this holiday, and it was the worst holiday he had been on , he was really anxious about getting a list of questions from "someone", He was really frustrated when I wasn't running off to get the questions. I had to tell him we were waiting for the said questions to come to us . That calmed him down. He also said oh nice of you to take the time to care about me and check how I am - if only he knew !! We just remained really calm with him and just kept saying we are leaving soon, we just need for you to get a little better . I'm not sure which is the best thing to do as I heard a nurse saying to him in a factual manner , you are not in a meeting in London , you are in hospital, she repeated it to him about 4 times x
Yes the nurse tonight said she had told him where he was, that he had been admitted with coronavirus and that he was in ICU.
They have told me to just try and remind him he is in hospital and he needs to stay to get better but even then he will say ok but tomorrow come and collect me and bring a change of clothes.
I think at times I just want to agree with him to not upset him so it's tricky really.
Fingers cross that this passes but also just got to focus on getting him off the ventilator🤞🏼
Thanks for sharing your experience xx
How is your dad now ?
Hi Avaco
He is doing much better, he has been stepped down from ICU to a general ward and starting his rehab journey now so 🤞🏼🙏🏽
How is mum? X
How’s your dad doing did he have his scan ?
Plan for my dad to have his tracheotomy removed Monday if everything goes to plan , fingers crossed 🤞 We managed to see him again today another social distance Visit outside in the gardens. He himself said he feels a little anxious being stepped down to a ward.
Was talking about his experience today out of the ten weeks in icu said he really only remembers the last three , just the beginning to realise how very I’ll he’s been. He more positive tho said his short term memory isn’t the best and he kept pausing when he was talking. Hopefully this is something which will get better over time . Still cracking his jokes with the nurses and getting back to himself every day xx
Hey
Dad had the scan and fortunately no sign of a stroke🙏🏽
He has found today tough as his sugars have been very low but mainly as he refuses to eat as he doesn't want to go to the toilet as he doesn't like the pad situation.
He said he got very breathless doing physio today but I imagine that is to be expected?
So so pleased you got to see your dad again😊
Did your dad work out himself that he has been in for 10 weeks or did you tell him?
My dad thinks he has been in for last 10-12 days xxxx
Nurses and myself have told him, he doesn’t even remember our early FaceTimes , just last three weeks.
He did look a bit sad talking about his experience but I think maybe it’s helping him , kept going back to being on kidney dialysis he is starting to understand how I’ll he was.
So pleased for you and your dad he hasn’t had a stroke.
Aww it’s so sad for them when they are proud and having to wear a pad , dad is now using commode and walking to the toilet sometimes .
Hope he gets his move soon and you get to visit it’s been such a long time for you . Ten weeks we have managed 3 visits while you haven’t had any 😢
I think once he sees you he will come on leaps and bounds xx
How is your dad now?
That’s for sure
Wow that's amazing, he could stand unaided - how long has he been in ICU for ? Most patients are struggling with muscle wastage and having to learn to walk etc x
Today is day 50 in ICU.
He was able to stand but only for a few seconds. Otherwise, when he’s able to video call us he’s quite tired as he’s doing a lot of physio, but I think it’s all baby steps xx
What’s your situation like? Xxx
Day 60, came off the ventilator 3 weeks ago, but had delirium , it's really on the last 9 days where my husband is coming back, his cognitive skills need lots of work , he can't walk , manged to stand in the last couple of days with 5 physio's supporting him, he also had drop foot .
I’m so pleased your husband is off the ventilator! I think it’s the toughest hurdle to overcome 💪
I’m sure every day you’ll hear bits of progress! Are you are able to communicate with him? Xx
Yes,I agree it was a major hurdle, I was naive and thought he would be okay once he was off the ventilator. We were zooming, but it was horrendous due to the delirium, he can now use his phone, which is much better as we can speak when it suits him and not when the nurses can support. xx
Yes Donna had the same sorts of issues. Day65 for her today. Stay strong people
How is Donna doing Josh?
How is weaning going?
Yes so my mum had covid, then double pneumonia and then they believe she had a bacterial infection after that in her lungs. She was treated with a strong steroid which cleared the lung infection but made her immune suppressed so she picked up another infection that took two rounds of antibiotics to treat. This think potentially it was an infection in her colon/bowels.
Apparently picking up infections anywhere in the body is common due to how the body functions whilst on a ventilator. And especially if they have immune suppressant medications.
She overcame them though, and one infection caused PRES swelling in her brain but it’s resolving.
Gosh it's all so stressful isn't it?
Dad hasn't spiked a fever again since yesterday evening so 🤞🏼🙏🏽
How is your mum doing today? Xx
Oh definitely; it’s all made so worse that we can’t keep ourselves feeling busy and semi useful supporting them at the bedside.
Mum had a rough afternoon yesterday and this morning in terms of very bad agitation and confusion. Hoping she gets a nap and wakes up with some improvement. They say the lack of sleep in icu doesn’t help at all.
X
Aww fingers crossed she manages some sleep and I'm sure that will definitely help her xx
How's mum? X
Hi sorry have been trying to keep busy and stay off the internet. She has good and bad days. She’s lost her sight due to other complications so that isn’t helping things but she ocassionally has clear conversations and explains her memories are mixed up and she doesn’t know what is real or not and other times she still severely suffering with delirium and communication is none or difficult.
Hoping we are on the right path now anyway. x
Oh I am sorry she's had complications but what a strong fighter your mum is!
Keeping everything crossed that your mum continues to take steps in the right direction xxxx
My father was the same had acute pneumonia with Covid, then 3 lots of infection, now has ha spneumonia due to veing ventilation and has another fungal infection due to the 3 try of the Tracheostomy, the Docs have said these are treatable with antibiotics. Havent managed to video call him since last Thursday, just want to see him.
Ohh sorry you haven't been able to videocall, will you get to videocall soon?
Dads CRP markers are raised again today but he doesn't have a fever so the docs aren't starting antibiotics and do not seem to worried about this so I am hoping it's not going to become an issue. They did say the have a back up plan on what antibiotics to start if he becomes symptomatic.
Day 7 in ICU with multiple organ failure
My husband Syd in icu 
Severe lung infection following Coronary Heart Bypass Surgery (CABG)
