Worried daughter: Hi, my dad is 59 no underlying... - ICUsteps

ICUsteps

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Worried daughter

19 Replies

Hi, my dad is 59 no underlying illness 5 weeks icu with covid-19. He's had a trachy for the past 2 weeks and has had trouble comming off sedation. He's suffered with many chest infections, everything else seems to be ok, he starts the breath on the ventilator and it's help support it, I've been updated from nurses everyday and they say he's not doing bad his oyxygen is at 40% but hearing from the doctor today he sounded super negative. He has lung damage but they said it can heal. But speaking again to the nurse she said he's doing well it's made me really confused and my family we don't know what to listen to this is a different doc he didn't know alot of things that been going on and when speaking last week the doctor said he has a good chance? I read through alot of success stories on here and was wondering had anyone had this experience, with reoccurring chest infections and got through it all. Just need Abit of hope.

19 Replies
LeopardGecko profile image
LeopardGecko

I always found that it depended on the person I spoke to as to how the update felt. The nurses who I had build up a bit of a relationship with always made things feel a little better when I spoke to them and some doctors (and nurses) would present the cold hard facts which would be difficult to hear.

I have heard that patients with covid seem to be taking a little longer to come round after sedation but I'm not sure why this would be.

I would say that it sounds like your dad is moving in the right direction from what you have said - try to remember those positives 🙂

in reply to LeopardGecko

I completely agree with that. Thankyou for that. I really hope he can move forward and we can get out of this nightmare.

Sepsur profile image
Sepsur

I had severe ARDS - an X-ray at some stage was taken of my lungs - they showed that my lungs had completely failed and in fact an ambu-bag was used to keep me alive because I couldnt tolerate intubation at the time.

Later, much later, I am breathless on occasion but I don’t have the level of issue that the doctors feared. I know not everyone will be so lucky but you have to hope for the best outcome and learn to deal with the reality. I hope your Dad continues to improve.

in reply to Sepsur

Thankyou for your reply.

NSMOD profile image
NSMOD

I am 62 and have followed a similar pathway. That said, I did not have a tracheotomy but am now out of ICU but still in hospital and getting ready to think about moving along into a physio pathway with a view to finally going home. Please don’t give up hope. One of the things that my wife have learned is to piece together the medical and status updates as a whole and try and look at the trends rather than any given spot point update. A lot depends on interpersonal style of the person giving the update , the vast majority of whom will find the positive for you and update that way , whereas the odd one or two just can’t master that art. The other thing to think about is that the nurses see your dad 24/7 and they have seen many patients so please do listen to what they have to say. In the end, it is the outcome you want so you could ask “is he improving, is he better than he was, is he still going in the right direction” type questions after any given update. I really hope he continues to improve and to get him out ICU and eventually home to his family. God Bless

Sepsur profile image
Sepsur in reply to NSMOD

Good points 😀

stevegnfd profile image
stevegnfd

Hi my wife has gone through this and yes it is worrying, doctor has to tell you how it is but the nurses are with the patients 24/7 they know what's going on so will tell you more.The chest infections will be dealt with antibiotics so they will get on top of it.

My wife had tracheostomy for two weeks

She is now eating talking had tracheostomy removed, now learning to walk, it is worrying but be positive, he will come through this he has made this far,

And is out off the worst bit.

Stay strong.

Steve x

Doggie1233 profile image
Doggie1233

Hi, we had exactly the same with my dad, the consultants always pretty negative (apart from when he really started to show improvement) but the nurses seemed more positive. My brother build a relationship with a male nurse who looked after our dad a lot and he was calling us in the end updating us about our dad and how he’d been getting on etc. He was very honest, in the beginning when he was very weak the nurse explained that he’s very poorly etc and as the journey went on he was giving us positive news and it was amazing. Hang in there that’s all I can say, look after urself as hard as it is u have to remain strong. It will end, ur dad sounds like he’s doing good with the oxygen as it’s fairly low and the fact they are trying to take sedation away is a good thing. It sounds just like my dad he had a trachy about 4 weeks in and remained on the ventilator for another 3.5 weeks, he had sepsis and also a chest infection but managed to fight them both off. It is a very long process so be patient. Can u do zoom calls with him? Xx

in reply to Doggie1233

Thankyou for all of that really good to know. We can't zoom him as he's still slightly sedated he didn't sign anything to say they can have him on a video call but we can speak to him and try to motivate him. The delirium is terrible it's been a while now hoping to get through it. They said today they have turned pressure town again x

Taciab2020 profile image
Taciab2020

I believe doctors sometimes want to give you the worst scenario so it’s not surprise later. They work with that they see but there is always the hope of things changing for the better. A year ago my brother in law nearly died. He had sepsis, wouldn’t wake up from sedation and even had to amputate most of his toes because of the adrenaline it was given to him to bring him back when he almost coded. Today, a year later it’s hard to even remember what happened because is completely recovered. All is great. God had plans for him that we couldn’t see during those difficult days. Never give up. There’s always hope. God can turn the most difficult diagnosis to recovery and life. Praying for your dad.

Well thankyou all so much for your kind words and advice me and my family really appreciate it. We are going to take everything on board. It's very uplifting to have people who have come out the other side of icu what ever illness they may have had. Thankyou.

Livinglifeachday profile image
Livinglifeachday

There is hope in your dad's situation, I can tell you from experience. My mother who is 55 has gone thru something very similar. She was hospitalized back in July due to covid and developed severed ARDS and several infections along the way. She also had a trachy done after she tested negative for covid, and it took her a while to completely come out of sedation. For the most part we would get positive news (that she was going on the right direction) but other times we would get updates from doctors saying otherwise. It's been 7 months and counting since my mom was hospitalized. I know this is something you might not want to hear, but sometimes all we can do is be patient and wait for our loved ones to hopefully turn a corner because that is all they might need, time. After her current doctors told us that my mother would be vent dependent and giving us no hope of her coming off, she did and has been off the vent for about a week and a half now. She has now downgraded to hiflo oxygen and tolerating it well. Keep in mind that my mom's vent oxygen fluctuated anywhere from 35-45% for several months.

To date, my mother continues to progress one step forward, 2 back. It's all part of the process from what I hear. But remember, any progress, no matter how small, is a positive thing.

in reply to Livinglifeachday

Oh I hope for your mum's recovery thankyou for the advice.

Psp007 profile image
Psp007

Hi! I think we are in a similar place except my dad has been with the trach longer. I think it was a set back because they transferred him to another hospital. He is at 50 % and peep around 7 and they say they will start to chip away on the ventilator but this week trying to reduce sedation still. Seems such a slow process and I am praying his oxygen requirement goes down over the next few days. We have also had calls from doctors being super negative and then we have some that say we would not be treating them if there was no hope! Please stay strong, i know it's hard as that's what people say but I am all cried out now so trying to keep positive and reading more success stories. Praying for your daddy too! xx

in reply to Psp007

Oh gosh we do sound the same. Thankyou for that I hope your dad gets better x

Thanks for the messages. For the past 2 days my dad has been out of bed in his chair. responding, still suffering with delirium but it's easing. They have put the tv on for him and some headphones. They've begun weaning him he's on minimal support 30% oxygen just pray it continues.

Mimi407 profile image
Mimi407

I feel the same with my dad week 4 coming strong. They are wanting to fit him with a trachey Wednesday and still fully sedated. I am all cried out😭 just praying for that miracle

in reply to Mimi407

If it helps I was just the same. Everytime he was due a trachy there was a set back and they finally got a window that being said they can recover from just being intubated for a long period of time the trachy just helps with the sedation weaning so dont give up hope!

Keenrunner profile image
Keenrunner

Hi my husband who is also 59 had a very similar experience to your dad. He was in icu for over 7 weeks with Covid and his lungs were badly effected. He had a tracheostomy for 3 weeks and several infections which were worrying at the time but he got through it and is now at home recovering with oxygen for when he needs it. I also found the nurses were often much more positive than the doctors. The nurses were with him all the time whereas some of the doctors hadn't met my husband and were just reading notes. Have hope as I'm sure he will improve soon x

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