Hello, Ive written here before and found a great comfort. Im really struggling at the moment as my mum has Adult respiratory distress syndrome (ARDS), "also called acute respiratory distress syndrome, a type of lung (pulmonary) failure that may result from any disease that causes large amounts of fluid to collect in the lungs. " which i was originally told was a rare type of pneumonia .
She's been in ICU 18 Days now. She now has a new lung infection called pseudomonas and back on sedation and oxygen at 60% so this is what they are currently treating.
She's just been probed (laid on tummy for 16 hours) with no effect and when she was coming up from sedation which i had the luxury to enjoy for 3 days, she was very upset (except the first day where she seemed ok and even smiled when I said they were going to brush her teeth) and seemed to laugh at something I said) the 2nd and 3rd day she was very anxious and frowning and shaking her head and when given her oral rinse "with chlorhexidine" on the sponge her stomach shook and she cried and reminded me of a baby. It really broke my heart as they do this every 2 hours. She can't speak because of the Trache and she can't move her arms or hands because of being sedated so long.
It is starting to feel like she might not get better because so far none of the anti biotics have worked and nothing has changed over all this time except the oxygen she needed went down to 35% but has now crept back up. She can't take Penicillin as it gives her a tummy ache, but I've now told the doctor to maybe try that and he agrees and didn't realise the penicillin allergy wasn't a dramatic one.
Also just been called by the doctor to say one of her lungs has collapsed which apparently is not out of the ordinary and can be fixed.
Im sorry to sound defeatist. I want nothing more than her to recover and get out of there. I love her so much. I am so worried that this will go on for months and months and she will be going through hell and then maybe not even recover.
Any thoughts would be great. Thank you.
Written by
ellie2014
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Hi ellie, I to had ARDS or lung shock whilst sedated for over a month and came out of it so there is alway's hope. It was a long hard battle after they brought me round but it can be beat but in small steps. I would say that the hardest times was the daily visits by the physio team who didn't take no for an answer but I new it had to be done and thank them now for their brilliant work with me. I remember getting very frustrated not being able to talk because of the trache and couldn't understand why nobody could not lip read my lips.
I do think that its probably harder for people visiting than it is for the patient and hopefully your mum feels like I did which was like your in some kind of dream, there was never any real pain but plenty of confusion. Keep saying positive things to her that will really help her to think the same way.
Try and keep positive ellie and I hope your mum starts to improve soon.
Thanks Tony . I will remember this . Im so grateful for your reply. A month is a long time . I will try to stay positive . Your message really really helps and I have it now as a screen shot to refer to daily!
Hi Ellie, I too had Pseudomonas (also VRE & MRSA) and collapsed lungs and ventilator and tracheostomy. This all happened4 years ago and I spent 2 months in ICU, followed by 6 months in hospital (2 in rehab) - SO yes it is possible to get through this. I am 64 years of age.
When you are on a trachy and heavily sedated you are very confused - I don't have many memories from that time except desperately trying to communicate "get me out of here" and the choking sensation whilst they were suctioning, can't remember anyone visiting etc.
I am in Australia so different medical system but I do know that they used the strongest antibiotics available as Pseudomonas is one of the antibiotic resistant "super bugs" - I was on 3 different Intravenous antibiotics for 8 months.
Am now living a happy life traveling in my RV all over Australia, so hang on in there - I agree it's harder for the people looking on so please try and take care of yourself. Once your mother is conscious if she would like to speak to someone who's made it through to the other side I would be happy to perhaps Skype with her. It really helped give me hope seeing someone who'd actually survived. At the time you feel like you'll be unable to move ever again. Annie
Oh my god thank you! It's amazing to hear your story and that you survived . That would be amazing for you to talk to her . She has such a fun personality normally I just know that talking to other survivors will lift her spirits . It must be so hard going through all that . I am a natural worrier . Your message is really helping me to be positive and visualise a positive outcome . Thanks again .
Oh ellie dont give up hope, the folk in ICU work wonders, at one point the doctors told my family that i was very sick and to expect the worst, they did not think that i would survive, my heart, lungs and my kidneys had all closed down and I was on 90% oxygen add to that my age (72) and it all looked very grim but I did make it and with no real lasting bad effects except that i am now a little tired, when i read your post i was so upset for you and i want to send you a hug, i know it is almost impossible to to keep upbeat in such circumstances but when you know that others have been in your shoes and and felt that all was lost but then it has turned around and we got better then you must feel hope, when she is better get her to do a post on here we would all love to talk to her because there will be 101 questions that she will need answering
Isabel xx hope your next post brings the best news
also just to let you know that I certainly was not in any kind of pain at any time and i also wasnt confused when i woke up i felt safe and looked after, i think that is because each time they did anything to me they called me by name and explained everything as they went along and even though i was sedated i think some of what they were saying got through and put my mind at rest and when i at last woke up i kinda knew what was going on, the only thing was they took a long time to give me a drink and i was so so thirsty also i did experience nightmares but these stopped once i got onto a normal ward
I was in ICU three and a half years ago with pneumonia, sepsis, multiple organ failure and ARDS on 100% oxygen at one point, my wife and family were told I had a less than 10% chance of survival, I can remember going in the ambulance to hospital, being taken into A&E and then I was in what can only be described as a bazaar virtual world which at times was terrifying believing people where trying to kill me. My first memory of ICU, was almost 8 weeks later, fortunately for me my wife and daughter kept a diary of that missing time, something I was very grateful for when I finally felt ready to read it, it was a very emotional read.
I spent 3 months in ICU at times believing I would never leave, I then spent a further 2 weeks on a ward before being discharged, looking and feeling a lot older than my 52 years, the first few months after leaving hospital were the worst for me, coming to terms with what has happened to you can be very difficult, but I was lucky to get great support from my family and the psychological help I needed. Recovery is a long process and you realize how lucky you are to have a second chance of life.
I'm now a trustee of ICUsteps helping others in their long road to recovery, for me it's a way of giving something back, that means so much to the people that have been through such a traumatic time, knowing that we have been through it to and understand the difficulties of recovery.
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