My dad is day 60 of being ventilated, he has come around just order 10 days ago after they reduced his sedation, at first there was concerns about the length of time to come around, brain ct was clear. He was obeying commands, however the last 3 days he has been extremely distressed and agitated, he had a very bad hour this morning where he deteriorated quickly and they upped his sedation a bit and paralizied him again to settle him. He has come back stable.
Due to the length of time on the vent they are basically saying hes not going to improve, his lungs are "severely, and extensively damaged" he would have done 2 weeks proning prior to being ventilated. Went through septic shock, numerous infections. Heart and kidneys working OK. He has had a trach done about 5 weeks ago.
He seems to get to a point but can't get any further.
Has anyone else had any similar situations? Its been over 10 weeks in total in ICU. With extreme ups and downs...
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Ted2020
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My mom is in the same boat. Today is week 6 on the vent and just a little bit more than 2 weeks with trach. She is just coming out of septic shock so her ammonia levels are elevated and kidneys needing dialysis. The hospitalist said to get it time to overcome the septic shock. My mom was also on sedation and just got off it all 4 days ago.
I am assuming her liver is fine? From what I’ve read septic shock can cause inflammation in the brain and prolong waking up on top of the sedation.
I hope your dad wakes up 🙏 we are praying out mom does too soon. It’s hard being patient.
HiI really hope your mom wakes up. Dad has woken and obeyed commands however his lungs do not seem to be improving and he is not progressing like the doctors would have hoped him too. .. it is such a horrific experience to see a loved one experience such trauma, pain and be so distressed. We cling to whatever little bit of hope there is ..🙏
Dad has had no liver issue, his septic shock happened very suddenly and we were told he had no chance but he pulled through.. its as alway wait and see....
We’ve also been told her lungs have fibrosis and no chance of recovery but she has. Two other doctors told us there is no way of knowing how much permanent damage there will be. They said to give it time.
How much have they been able to to reduce the vent? FiO2?
They haven't given us numbers, but he is on a spontanious mode most of the time . His oxygen level is 45% generally but had to be increased today during his period of decoration.
His lungs have very slightly improved a few times only to have gotten worse again. One step forward and 2 back seems to be the case. He has lost extreme weight and very little muscle strength
My mom also had a hard time getting off sedation. She was on fentanyl, propofol and precedex. Every time they lowered it, her bp, breathing and hr would increase and show agitation. They moved her to a fentanyl patch and a few days later they stopped it completely no weaning and switched her to propofol instead. She was on propofol for a few days then just stopped it completely too.
Have they tried to switch to switch the type of sedation combos?
Yes they have used a patch recently and switched from various sedation meds. He was requiring minimal sedation to keep him at ease but awake, however the last 3 days he has been very distressed so they upped it a bit this morning ..its a combination of so much sedation, antibiotics, pain relief and even methadone they are trying to find what fits for him he communicated that he was having difficulty breathing but pain was ok at the moment .
But they gave us verry ittle hope today for improvements , its so disheartening after coming so far and so long.. how is your mom doing?
I am so sorry. I hope it’s just one of the lows and there is better days ahead. It is day 4 since all sedation was turned off but at the same time she went thru septic shock and is on antibiotics and things are trending down. She was on 30% on the vent yesterday but today is 45% but the doctor said they are trying to adjust the support to get her to breath more on her own so we are hoping that is why it had to go up to 45% today bc it was a harder setting for her.
She’s been hospitalized since 11/19 and on vent since 12/7. The hard thing to accept being 800 miles away is that she is alone and my dad can’t be with her and it happened so abruptly. She had minor symptoms for almost a week and one morning it just turned so bad she was so weak and had sob. I didn’t even get to talk to her. She s only 63 and has so much life to live and my 1yr old daughter to spoil.
Your story is very similar even timelines dad had fly like symptoms then deteoriated on about day 9 isolating at home went to hosp did 2 weeks proning then he was vventilated on 11/20.
We did get to visit however with cases increasing rapidly we haven't been in since christmas. He is 65 and loved his grandchildren so much , I have 4 and he has often minded all 4 together although spoiling them totally ...
Your mom sounds like she is a fighter and I hope she progresses and comes home to you. Very difficult being so far away. I can only imagine.
My husband had blood clots in his lungs and a doctor used blood thinners and it worked? They told me it could cause bleeding, but I said better to try and take a risk, than to just let him lay there and do nothing?
Gosh please keep me updated. I feel like my mum is in similar stage she’s on week 7. She gets agitated when they try to wake her up so they up the sedation again. That has basically been the cycle so far. Her other organs ok but lungs severely damaged. She responds well to us on FaceTime but it’s sad we can’t be there for her
Hi oxygen has been up and down generally 45% yes they have mentioned it but cand say how bad for sure. They tried turning the vent off but he only managed 15mi.n
It’s like you are describing my mum here. Oxygen around the 45% they trialed her to breath on own. Managed 2 hours but she got so tired they had to increase sedation. I really hope they both gain strength and that lungs repair themselves. She suffers from bad delirium so when sedation wears off she gets agitated and breathless
You definitely are describing what we are experiencing..some of the nurses say where there is life there is hope. Thats all we have at the moment but it is something. X
Definitely true where there is life there is hope ! My dad 65 spent 11weeks in ICU back in March with covid ventilated for 73 days , many up and downs . Kidneys failed for 5 weeks . So many problems , but home since June , he came home without oxygen and within a week up and down the stairs . It was the FaceTimes which spared him
On he said especially seeing his grandchildren .
I feel for anyone in this position watching a loved one going through this , but please take time for yourself and try to remain positive. Xx
His kidneys failed due to the covid , he went on to kidney dialysis within the first week of being ventilated and was on and out for six weeks . However I believe when people are somewhat critically ill it’s the kidneys which are the last to recover . He doesn’t remember any of this period and his kidneys have fully recovered with no lasting effects . X
Okay my mom’s is due to septic shock. Hopefully it is only acute and she can start outputting her own fluids. Her urine output had gone down to nearly nothing in a 24 hrs period due to the shock. I hate this so much for her.
Since being home his aftercare has been pretty poor , he’s only had one scan there is some damage . He gets breathless and he is nowhere near back to himself , he has improved somewhat and is hoping this will get better over time . Covid is still one of them things which tends to give him good days and bad.
Thank you for replying.. all we have is hope.. I do really hope your dad continues on the path to recovery. I know just to have him home is always anyone wants.. and hope they improve xx
I am 72 and was in icu back at the end of December 2019. I was ventilated/ sedated for nearly 2 months. It took a long time to ween me off and even then it took me a while to wake up. I came home mid March and still steadily recovering.
HiWow, thank you so much for your reply. Can I just ask did you have much damage you your lungs? It seems to be dads main issue with extreme agitation at the moment
That’s a complicated question. As such I was not aware of any damage however now I have been diagnosed with pulmonary fibrosis which may be caused by methotrexate (arthritis drug) / icu trauma / pneumonia (COVID) I waiting for a further out patient appointment. I certainly came out with icu cough which progressively got worse and does affect my breathing
Interesting you mention methotrexate, dad had been on this for a while previous to getting covid, which would have severely hampered his immune... probably the main reason he is where he is he had bad arthritis. He definitely has damage but to what permanent extent we don't know
Yes, in all I was in ICU 90 days, 57 in an induced coma. I had septic shock, multiple organ failure, double pneumonia, severe ARDS & leukaemia- multiple infections, dialysis for 7 weeks - little chance of survival. As I began to wake, I experienced ICUdelirium which was terrifying - might this explain your father’s agitation? The agitation seems to be a common legacy of critical illness & the weaning process. I hope your father continues to improve. It is a long haul-
Hi.Can I just ask . Does the delirium improve only after icu or can it improve while awake , slightly sedated and still in ICU... I know it probably depends on each individual ..just I suppose from your experience what do you think?
Yes we think it is delirium, just from researchbi have done. The doctors are not holding out hope and have reinstated a DNR. How do you over come the agitation without getting sedated again?
My dad has been in ICU almost two months after a hemmoraghic brain stroke and they said the same thing, but he just came off vent. It took longer for him to come off I think it just depends on the person. But he still has a trach in. Sometimes it take a while but it's still possible to come off vent after two months and continue healing.
Hi, thank you Dads lungs and muscles seem to be the main issue lungs are badly damaged and his muscles even for breathing are so so weak.. its wait and see really
I am sorry to hear the terrible time your dad is going through. I am 62 and was on life support a year and 2 months ago. I had a misdiagnosed appendicitis and it ruptured shortly afterwards. The poison went through my body and went septic. Every organ shut down and was in the hospital for a month with the first week on life support. It takes a very bad toll on your whole body and was told afterwards my recovery could be up to two years. Your dad has been through a lot and now that his organs are working again is a good sign . There will be good days and not so good. When I came home the first month or so I spent sleeping most of the time and could do very little. I hope he may be eventually be able to speak without a trach but it may be a while yet. Don't give up and many prayers for his recovery. Remember his whole body has suffered a lot of trauma simply from the ventilator alone . Try to comfort by him by reminding him of good things in life before this all happened and happier times. Smile and give a whole lot of love.
Hi.Thank you so much for such encouragement. Just sometimes it is so hard to stay positive when the doctors and nurses are continually telling you otherwise. However the fact he is still here has to mean something . His lungs just need time to heal enough so he can breath more on his own and his internal muscles fo facilitate his breathing.
It sounds like you had a really tough time in ICU which cant even describe it really I know but your words help and experience xxx
I am glad to give you a bit of insight with regards to what you and your family are facing. The fact he is still here definitely is a sign that his body is not yet ready to give up. Never give up! Doctors were advising that my affairs be put in order but my husband said no, Elsie has a strong heart and is a very determined person. When I finally woke from this terrible ordeal my surgeon said it was a miracle. Believe in miracles as they do happen and be positive. The healing may take some time but have patience and a positive outlook. Many Prayers
Hi, this sounds word for word the same as my mum shes 58. Shes been in a coma for 9 weeks she woke 11th of Jan. It took alot of sedation weaning on and off till she woke she has a blood clot had sepsis and kidney dialysis twice. She's awake now but with the Tracheostomy which she had 16th December and hoping to take out tomorrow. She'd now learning to move her body is weak her lungs are hard and she's very depressed we can only facetime her to see her. My point is don't give up hope I was told 4th December my mum wasn't getting better or responding to treatment and she did. Dont give up. Your dad will need u. I rang my mums phone alot n the nurse put it by her head on speaker so I could talk to her. It helps to talk even if they can't reply. I also spoke with samaritans they helped me by just listening giving advice on how to relax and off load to a 3rd party. I wish u all the luck x
yes this sounds very like dad. Your mom is definitely a strong fighter.
When you say she woke on Jan 11 was this the last time they had to sedate her? Has she been weaned off the ventilator now since?
Dad was sedated again 2 days which they are now bringing down slowly.
He was extremely distressed and agitated for the last week and his heart was racing a bit yesterday so the eventually decided to up the sedation again to try calm everything down. His lungs are very bad and they have even said they don't know if they will ever be better enough to come off the vent.
He has a tracheostomy also but extremely difficult to wean.
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