Dad still on ventilator with no improvement

[asb316]

Hi, I have just recently joined this site to find some hope in the current situation I am in (and many others are in) and not sure what to do. My dad (66 yrs) has been in ICU for around 5 weeks and on a ventilator. Overall his health and lifestyle was generally good and he was active in the run up to getting covid. He has asthma (mild) and also had stents inserted into his heart 2 years ago. He is not diabetic or even overweight.

So his current situation is that he is currently on high oxygen (70-80%) and his co2 levels have been quite high over the last few weeks. He was in an induced coma for 2 weeks straight and then that was reduced down to a lower level of sedation. At one point he opened his eyes and was able to briefly interacting with us by raising his eyebrows during a video call.

Organs overall are ok, the heart (right side) is having to work slightly harder due to the stiffness of his lungs. Kidneys are passing urine ok. CT scan and Xrays have shown Fibrosis which they advise they cannot help with. His first initial scan when he was admitted looked ok and there was not a lot of white shadows. Even now when we saw the xray it didnt seem as bad as i have seen some online which people still live with. He is currently Covid-Negative and does not have any other infections.

The doctors/consultants have said there is not much more they can do in terms of treatments as they have tried all available options and that we should consider palliative care. They have been extremely pessimistic throughout this ordeal which hasn't made things easier for us.

I have read many stories on this site of people recovering in all sorts of circumstances and just wish he can pull through in a similar manner. We wont be giving up on him even if the odds are against him. He's still fighting it.

[FamilyHistorian]

Hi Asb

You can see more about me in my profile.

I’m not a medical person but I have noticed that some medical teams are more pessimistic I suppose they are trying to cover themselves.

If you feel that you aren’t get very far with the medics it may be worth speaking to PALs their contact will be on t he e hospital’s website. One question might be why can’t they do something about the fibrosis? 9 months I have been diagnosed with pulmonary fibrosis and I am waiting 3 months) for a appointment thoracic medicine however PALs are able to act as your advocate and they will be able to pass information to you in understandable terms.

Once I was in ICU they expected me to be there for 1 week, then 2 and then 4 and in the end I was sedated for nearly 2 months. The family had the call twice by I have been home since march’20

[asb316 in reply to FamilyHistorian]

Hi There,

Thanks for the quick reply.

I have read up your profile and looks like someone is definitely looking down on you! I applaud your strength and tenacity in getting through what you have.

I will definitely follow up with PALs and get some further advice on this.

So they have basically said there is a lot of scarring which "most likely" is fibrotic and irreversible. When we raised the question how can you be sure it is not buildup of fluid and debris left by the covid (and other infections developed in ICU) and just needs more time to be able for the lungs to clear this out, they could not give a definitive answer.

I myself have had mild/moderate symptoms of covid a few days after my dad and still am recovering from it (still get persistent coughs, dry throat, shortness of breath, lethargy)

At this point in time they have said they will not be escalating i.e. further treatments as they have exhausted all the current options. He is currently on Dexamethasone for inflammation, no antibiotics and is on sedation drugs to make him more comfortable. They tried the weaning process a few times and dad gets agitated so they have to increase sedation.

Thanks again.

[Sepsur]

As @FamilyHistorian has said - please feel free to read my bio - someone gave me a ‘get out of jail free’ card too.

[asb316 in reply to Sepsur]

Hi,

Thanks for the response.

Read your bio and you are definitely a walking miracle!

These are tough times for many people and i pray we see more positive outcomes.

[FamilyHistorian]

I think you will find they can tell the difference between scaring and fluid from the X-rays / CAT Scan. I had both scaring & fluid and had a number drains. I was on loads of antibiotics and caught infections. When they tried to wean me off I got very agitated and had to be put back under.

Do be careful about your cough and don’t just assume it’s a covid cough. NHS advice is that a persisting cough should be investigated.

I came out with what is called an ICU cough. Over time it got worse as did my breathing. When I mentioned this to my GP she went into overdrive I had an X-ray followed by a CAT scan (mind you I had had lots of these when in hospital) she was able to confirm it wasn’t cancer but P Fibrosis which is scaring caused by either ICU trauma or pneumonia or methotrexate (arthritis drug) or any combination. Take your choice.

[asb316 in reply to FamilyHistorian]

They tried to wean my dad also off and he had to be put back on sedation due to agitation.

So would you say you are living with significant less lung capacity overall? how does it affect you day to day?

Thanks for the information, this is really helpful to try and understand this virus and how it affects the body. Much appreciated.

[TB07 in reply to FamilyHistorian]

What are the drains used for??

[FamilyHistorian in reply to TB07]

These are tubes that are inserted into the body drain fluid. In my case I had 4 in my lungs.

[TB07 in reply to FamilyHistorian]

Did they find fluid around your lungs? Did they find it on an X-ray or ultrasound??

[FamilyHistorian in reply to TB07]

Yes I did and it was recurring. I don’t know what sort of scan / X-ray they used.

[Ferham]

Hi, My husband was admitted in the first wave with Covid. They did several x rays and CT's of his lungs. I saw his first X ray when he was first admitted and then the next one 3 weeks later. The second one was much worse than the first, it actually broke me seeing it, they were so heavily consolidated, My husband has been diagnosed with fibrosis , but we are always being told we don't know if it will recover . My husband is able to walk unaided now and doesn't need any oxygen support . From our perspective it is just time needed for the lings to recover. As others have said speak to PALS .

Please fell free to ask anything

[asb316 in reply to Ferham]

Thank you for the response, i really appreciate this.

That is pretty much the same situation as my dad. First initial x-ray and CT scans didnt look too bad and the following scans done at 2-3 weeks were worse but not so bad that they were like a white netted curtain.

I am so happy for you and your husband. This gives me great comfort to know people are recovering even if the odds are stacked up against them and there seems no light at the end of the tunnel.

Can i ask how long your husband was in ICU, his age, overall health etc. Also did he require 24/7 oxygen after coming out? Was he on the ventilator? Sorry for all the questions but I feel really helpless in this situation.

Thanks again

[Ferham in reply to asb316]

Yes of course you can, he was 59 and in good health , went to the gym several times a week. He has mild asthma which is very well controlled.He was in hospital for 3 days before going into ITU, he was in there for just under 6 weeks, then 3.5 weeks on a critical care ward, them 3.5 weeks in a rehab centre.

He was on oxygen 24/7for about a week in critical care , and now he doesn't need any .

It is a dark and desperate time for you, honestly if I can help at all please let me know .

[TB07]

Thank you for sharing your experience. My dads is similar. I’m so very sorry for what you are going through, I know the feeling. My dad is 43 days on vent, has trach, has been on max vent settings for 2 wks w no improvement. They can’t even prone my dad bc his sats drop so low they’re scared to. He is current only satting in the mid 70s at 100% oxygen.

[asb316 in reply to TB07]

Hi,

No problem. I am also sorry for what you are going through. Its so difficult dealing with the ups and downs each day, although it feels like more downs at the moment. When my dad went to 100% oxygen a few weeks ago they had to prone him which bought his oxygen down to 65%. But they said proning works better during the initial phase of the infection and not later. They tried proning my dad again a few weeks after that as his oxygen requirements shot up again but it didnt have as much effect as the first time.

Proning is definitely useful if things take a turn for the worst but it is a delicate thing to do hence they dont take any rush decisions to do it unless its life threatening.

My dad is currently at 85% Oxygen with very high co2 levels which they are very concerned about. Im trying to keep hope that he gets over this hurdle has with many others and stabilises again. I pray for your dad he gets better and quickly. Have they mentioned anything on the CT scans/Xrays about your dads lungs as well as other organs?

[lynnmarr in reply to asb316]

My husband was heavily sedated for 52 days on the ventilator. They finally used a balance of anxiety meds and sedation meds to wean him off high sedation. It then took another 31 days to wake up! But he did! Don't give up, they told me 3 times to pull plug!

[TB07]

They haven’t been able to do a single ct scan bc he can’t be moved. I’m wondering if he has fluid around his lungs or pressure around his lungs that an x-ray isn’t picking up. Typically a CT scan would pick that up.

[asb316]

Just had another call from the consultant and they are saying they are very concerned for my dad and he is currently on 90% oxygen and has high co2 in the blood (20, after doing blood gas test) normal person's is under 6. He said my dad might deteriorate quickly and to come and visit (this has happened a few times before but he fought through it) is there any hope and has anyone had the same where the co2 is so high and it blips and reduces? I hate this rollercoaster of emotions, its so draining and just feel so helpless.

[Amz_49 in reply to asb316]

Hi what was the outcome of this all?

[Mccarthy0702]

My dad was very ill with covid back in March , ventilated for 73 days and many times not expected to survive . His condition was really static up until they drained some fluid from his lungs , it was only then did he begin to improve slowly every day . He was on dialysis for the first five weeks as his kidneys had failed and his lung collapsed.My dad was the sickest patient in the ICU but we were so lucky the doctors and nurses never give up on him .

I really hope your dad gets the treatment he deserves .

Xx

[Hsushhs]

Just an update on the situation..my beautiful dad passed away early this morning. He is now with God and looking down on his family. Thank you all for your comments and help.

[Doggie1233 in reply to Hsushhs]

So sorry to read this awful news, thoughts to u and ur family x

[Mccarthy0702 in reply to Hsushhs]

So sorry for your loss from this horrible virus 😢 xx

[Doggie1233]

Hey, how is ur dad doing now? I’ve just been reading ur post x

[Tillyfloss2010]

Hi there, I read this was a few months ago, hope your dad is recovering now. My dad is also in an induced come for the last 17 days, not covid related, his oesophagus erupted causing catasopic trouble for him, kidneys failed, lungs not working well and sepsis along with many other terrible effects. He's 72. I fully understand your pain and hope your dad is making a recovery, x