Partner on day 28 in ICU...Legionella and ARDS

My partner, Dave, thought he had the flu on March 2nd, 2017, I went to check on him and found that he couldn't stop coughing and was having trouble breathing. We went to the hospital to discover he had bi-lateral pneumonia (later it was determined to be legionella pneumonia or Legionaires Disease) and sepsis. He was intubated, put on a ventilator and admitted to the ICU. After about a week with no progress, Dave developed ARDS and then the 2nd stage of ARDS in which the lungs develop scar tissue.

We currently are on day 28...he is still heavily sedated on propofol and fentynal (and for a while, Ketamine), received a tracheostomy March 25th and developed an infection March 26th which sent his vitals plummeting.

I also want to make sure I have the tools and knowledge to help him transition from waking up after such a long period of sedation (I already think he is having hallucinations based on his facial expressions which range from amusement to terror) to the very long process of recovery (Dr.'s say "If he survives, it will take years".

I am so grateful to find this forum! Seeing others who have gone through similar and come out the other end...even with scars that are physical and psychological..is such a relief and comfort! Thank Y'all for being here and thanks for being a resource to those who are in the middle of the fight of their lives!

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  • I'm sorry to hear what you and your partner have been through.

    How did they treat the ARDS despite antibiotics and the ventilation/tracheostomy?

    Did they prone your partner? Did they give Nitric Oxide or Flolan/Prostacycline?

    Also, why are they not waking him up after he's had the tracheostomy? One of the goals of a tracheostomy during critical illness is to minimise sedation? Have they done that?

    Check out this articles/videos here

    Why Would A Critically Ill Patient In An Induced Coma Need A Tracheostomy In Intensive Care? intensivecarehotline.com/qu...

    WHAT ARE THE RISKS AND BENEFITS OF A TRACHEOSTOMY? intensivecarehotline.com/qu...

  • Hi Fritz. They did prone Dave at least 4 times with little result. I don't know about Nitric Oxide or Flolan...I will ask today. The doctors have been honest enough to say they have not seen a case of Legionella this severe and they are somewhat baffled as to why his lungs are not responding/healing

    They are not able to wake him up because the day after the tracheostomy (last Sunday) he developed a 102 degree (39 C) fever, his oxygen levels dropped, his pulse sky rocketed and they had to up his ventilator settings to 90% Oxygen/ 15 PEEP, they determined he developed a "pus pocket" in one lung that caused this infection. Every time they lower his sedation, he becomes very agitated and starts moving his legs and arms wildly and his oxygen levels drop below 87 and as far down as 78-79

    He is either fighting the sedation or, more likely, becoming used to it....we believe he can recognize myself and his family, he has (possibly) responded to small requests "can you see me" nod, "would you like chapstick?" nod, "Can you squeeze my hand?" light squeeze. He also throws his leg over the side of the bed as if he wants to run away (who can blame him!)

    I can't stand how long he has been on such powerful drugs! But they tell me if his lungs don't heal, he will be dead. Doctors are already starting sentences with "If he survives...." and ending with "...this will take years for recovery."

    We are taking it one day at a time...yesterday we celebrated that it seemed he was able to really see us for the first time even though the Doctors are saying there is no real change...

  • If they proned him with little effect they should have offered and should still offer him ECMO for ARDS

    ECMO intensivecarehotline.com/ec...

    My Mum has been in ICU for three weeks now and she is on ECMO for ARDS! Will she survive? intensivecarehotline.com/qu... )

  • Hi lovely, I was in a coma for 2 weeks last year with sepsis double pneumonia, cardiac arrest and swine flu. I had the most horrific nightmares and after waking, I spent 4 months thinking I was dead.

    I'm 1 year out of hospital now, I'm back full time at work and I manage a team of men. My brain function is slow, but not obvious to people who don't know me well but I already had a high iq so I notice it more than others. I was bed bound for 3 months and completed a back go work plan over 20 weeks going from 1 hour every other day from home to 40 hours.

    I'm still on my recovery but I'm 90% better. Yes it does take a year or 2, but the thick end of the wedge is in the first 6 months. If you can take time off work to be with him that would be wonderful. It does get easier and he will recover but he will be very agitated upon awakening and this won't subside for a few days.

    He will be very confused so keep reassuring him that he is safe, and making good progress. Forgive him any snappy moods he may suffer, he won't mean it and it's only from frustration. Be his care giver initially but also be his girlfriend as soon as you are both able to return to normality. My husband and I are in a transitional period of him realising I'm ok now, he can stop worrying and be my best friend and husband again x

  • Sorry to hear this but keep hoping.

    Exactly the same thing happened to me more than a year ago but as a result of acute pancreatitis. I was in a hospital in China for 30 days in an induced coma with the same drugs and exactly the same treatment, and indeed a whole series of hallucinations but good and bad that I remember to every single detail. What happened made the good relationship with my wife even stronger. I am fully recovered now with the worst part of the recovery being over after 10 to 12 weeks. I have lost a lot of weight and some of my physical power, and from time to time I have some pain in my finger joints. A small price for a second life. Don't give up

  • Hi Sparklecat,

    I left hospital 6 years ago today after spending 108 days in hospital, 88 of those days in ICU, I had had a chest infection so went to see my GP who gave me some antibiotics but 3 days later on 18th December 2010 I was rush to hospital by ambulance with sats of 72%, I remember being taken into A&E and then waking up on 6th February with a tube strapped to my neck unable to speak, being told I had been very ill (I later found out that was very much an understatement) and had a tracheotomy, that time for me was full of some of the most terrifying nightmares with a few bizarre ones that were amusing, I can still recall them though as if it was yesterday.

    In reality I had been so critical with double pneumonia, severe sepsis, multiple organ failure, lung abscesses & ARDS that turn my lungs into a patchwork quilt, I spent 6 weeks on dialysis, received 8 units of blood & for good measure I had a Peri arrest and stopped breathing for 10 mins & had 2 cardiac arrests while the doctor tried to remove a mucus plug the size of a golf ball but amazingly I survived and remember the consultant telling me there had been a miracle as I later found out they had tried every drug they could find to treat the pneumonia & sepsis as there is no treatment for ARDS.

    I left hospital with a lung capacity of 54% and almost 4 stone lighter, looking about 20 years older than my 52 years, it took me around two years to get to a level where it stopped improving with my lung capacity up to 86% & my blood oxygen at 93%, I've had to learn to take life at a slower pace as the ARDS has restricted the gas transfer in the lungs & the sepsis caused some nerve & joints damage.

    Six years on I'm still here and enjoying life, unfortunately it finished my working career which I found very hard to deal with having to sell up my carpentry & joinery business broke my heart but I learned that a second chance of life is better than any material things.

    I'm living proof that miracles can happen so wish your partner Dave my best wishes in a good recovery as I'm sure everyone in this community does.

    Bill

  • Hi. I was in an induced coma 6 months ago due to pneumonia. I was heavily sedated, intubated and paralyzed. I too thought it was just a flu and that it would get better but I got to the point where I couldn't breathe and had to call an ambulance. Next thing I know I woke up in a hospital 2 weeks later totally freaked out with massive hallucinations. Nurses and drs everywhere. It was so scary. Ill never forget it. I must say its definitely one of those things you have to experience to understand. Your partner will get through it but recovery does take some time. Just be there for him its the best thing you can do. All the best.

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