Update (Dad 10 weeks ventilated)

[Ted2020]

Hi

my dad is day 70 on ventilator tomorrow, he had previously come around however is now is back sedated although he wakes up sporadically and has some movement as well as obeying commands. his lungs are extremely bad... we were brought into the hospital for a "meeting" to " Discuss" his case... basically there was no discussion they were telling us there was no hope and they would not be increasing his care if he required it... we had a feeling this was coming all week just on what nurses were saying etc... we really don't agree as he has fought so hard for 12 weeks now... and hes still here ..they keep saying hes on the ventilator too long and will never come off....... I had reached out to another hospital who specialise in lungs and respiratory issues... they agreed to take him on and have a look.... obviously we didn't even think they would but they said if it was their dad they would like to know too they tried their best too but there was a good chance his outcome would be the same, they said they also never replied to an email like I sent before and not sure why....

However when I told our current hospital about this they were less than impressed and totally disagreed with us, during our meeting to the point where the clinical manager said we were not thinking of the patient... we were so angry.. this is only the tip of what they said....

The care he had received in that hospital we could never say a bad word about them , amazing nurses he would not be alive still without them..

If there is even the slightest chance we will fight for him..how can they not see that...

We are now awaiting on bed to come avaiable in the new hospital we were told a few days, the wait is so stressful as you all know so much can happen in such a shot time in icu and we want to make sure he makes it to the new hospital....

We need to know we have tried everything we could to help him..

KEEP FIGHTING...

The advice from all here keeps us going xxxx

[Sepsur]

You have to remain hopeful, I agree

[lynnmarr]

I also had a bad experience with my husband's first hospital. After I moved him to the hospital his primary doctor worked things got better.

[Anuur44]

How is your dad doing now. Hoping for a quick recovery x

[Ted2020]

HiHe was moved to his new hospital since last Tuesday. Picked up another infection just before the move. We think its another sepsis infection , hes fighting hard but it seem to be hanging around a bit longer as in, he still has a temp and infection markers haven't come down yet. He's on alot more antibiotics.

The hospital said they will leave no stone unturned but that he was extremely sick and basically we are looking for a miracle. H

There is little to no lung function there ..

Over 11 weeks on the ventilator now.. but he is still fighting. Xxx.

How is your mum doing?

[Sepsur in reply to Ted2020]

I hope he turns a corner soon

[Mcs1313]

How’s your dad? I pray better ♥️

[Ted2020 in reply to Mcs1313]

Update on dad almost 13 weeks ventilated

Hi, thank you for asking. Hw has swttlednin well in his new hospital after a shaky few days of a bad sepsis infection.

he is now off all sedation, slowly coming around. It looks like he might be experiencing hypo delerium this time as he is not looking agitated etc. His eyes are opening and some days obeys commands. He needs to do this consistently and be more awake.We got in to visit at the weekend, he has lost so much weight and it is the first time I have seen him awake, he knew we were there for sure, I showed him videos of the grandkids ( he's an amazing grandad) and I think he smiled. It is I think even harder to see him like this even than when he was fully sedated.

His infection looks to be under control for the moment but it is more or less get over one and another one starts

.

His respiratory rate is the main concern it is always about 45 -55... which is very high. They have said do, that some how he is managing it as in he is getting the oxygen hw needs feom this and iniatiing each breath.. his muscles are so weak we are hoping this will improve with more physio

He is on the spontanious modenstillnon the vent.

All other organs have always and are working fine , which they have said is very unusual but obviously a good thing.

It is just going to be extremely slow and that's if we are lucky ..we are still looking for the miracle.

It is very much 1 good day, 1 bad, 2 stable and maybe good again....

He will be 13 weeks ventilated this week and a additional 2 weeks previous proning before that in icu......

[Texbenji in reply to Ted2020]

Hi Ted, how is your dad doing?

My mom is approaching 11 weeks on vent tomorrow and 13 weeks in hospital. She’s going thru bouts of anxiety whenever she is awake causing her vitals to jump up high. So then they give her some sedation to calm her. So now she is mostly asleep again 😔 I hate that they had to start giving her sedation again. My mom three weeks ago worked her way down to cpap mode and things were looking up but this anxiety she is going thru sets her back tremendously.

Did your dad’s agitation finally go away?

[Ted2020 in reply to Texbenji]

Hi.This all sounds so familiar.

We got dad moved to a different hospital as the one where he was wanted to stop his care. They said he was never going to improve.

The same happened to him extremely agitated3 when off sedation..

However in the new hospital now 2.5 weeks and he is off all sedation nearly 2 weeks.. slow to come around and other antibiotics and meds he is on makes him drowsy and he is very tired from the physio... but he is not agitated like before.

He is still on the ventilator which they are bringing down his support very slowly but it is coming down ...

They seam to be able to manage his anxiety more, he is on anti depressants, zanax, methadone for withdrawls etc... they seam to have more experience...

We are no where near out of the woods but they have said there is still hope and that an untreatable infection is what will set him back as they become more resistant to the drugs...

Over 13 weeks now in the ventilator plus an additional 2 weeks prior in icu proning...

Wow down to cpap that was progress..we haven't got that far... its a horrific time for everyone involved

[Texbenji in reply to Ted2020]

I am glad to hear things are improving it’s your dad. How did it work to move hospitals with insurance? I am worried they will soon tell us there is nothing else they can do too. They want to move her to a skilled nursing facility next but can’t until she’s off the sedation again and vent less than 50%. Since she was on cpap three weeks ago she’s had to go back up on the vent to 40-45% bc she’s breathing too fast due to the anxiety.

What sedation did they put your dad back on? I will ask if they still have her on her antidepressants and anxiety meds.

They also have told us about these infections becoming more and more resistant. Did they tell you what they would do next if that happened?

[Ted2020]

Well I wouldn't quiet say improving but maby trending in the right direction I suppose.

I emailed a few different hospitals for a second opinion, nor expecting any reply and I did from one where they offered to take him on. Last resort really they would have better facilities and more experience dealing with long term ventilated patients.

His oxygen requirement would not be his main issue it is his lungs and the bigger picture really, as he is so long on the vent he is very dependant on it and his support is coming down extremely slowly and not every day he tolerates it.

They have said it is possible they run out of drugs to treat the infections and at that point there will be nothing more that can be done .

[Forever-hopeful in reply to Ted2020]

Hi Ted, how is your dad any update? Your dad is so lucky he has a family like yours fighting for him. Can I ask, is this UK and what part? Praying for you xx

[Ted2020 in reply to Forever-hopeful]

Hi forever-hopefulDad passed away on the 6th March.. he had come so far, he did improve in the new hospital but had another setback of a new infection and was retaining co2, he just had no reserves left he was on the vent almost 16 weeks with an additional 2 weeks in icu before that.

He was just so unlucky with his lungs being his only organ affected but they were so bad . Improved a little only to get worse again with a new Infection. He was fully off sedation, and responding with good and bad days

We are compleatly heartbroken, we tried everything for him. But it was not to be. One thing I have to say is that this site has been great and support has been amazing .

Please for anyone else in a similar situation , do not give up and try everything you will only have regrets of not. X

[Forever-hopeful in reply to Ted2020]

I am so very sorry to hear this sad news. I hope for peace to you and your family. I agree this site is very helpful in the support from the members. X

[CN1985]

I am so sorry to hear this. My dad passed away too in January after 5 weeks on a ventilator. We took the decision to turn off his life support, as he had brain damage due to Covid. Your dad was very brave to fight so hard and he will always live through you. Thoughts are with you. Thanks