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Need help/advice: Dad sedated in the hospital on ventilator extremely agitated
A few weeks ago my dad was told he had vasculitis, confirmed from a kidney biopsy. The doctors never said if he had Wegeners, but from what it seems from his symptoms, affecting his sinuses, lungs and kidneys, it seems to definitely be Wegeners or MPA. Things started going downhill the middle of November. My dad starting losing a lot of weight and feeling tired all the time. By December he was laying in bed everyday and not able to concentrate too well. He went to the doctors and they did a blood test. On December 19, he passed out in the doctors office after hearing the news that his kidneys were failing and was rushed to the hospital. He found out his kidneys were functioning at only 10%. They did a biopsy a few days later to try to figure out what was going on and that is when they determined it was the autoimmune disorder causing inflammation to his kidneys, resulting in acute kidney failure. Immediately, they started him on 400 mg of Predisone for three days, as well as cytoxan (I believe 250 mg or mcg, not sure). He was also coughing up mucus and blood and having pain in his chest and shortness of breath that started while in the hospital. They did a chest x ray and an MRI I believe which showed that he had scarring throughout the lungs. The doctors were not sure what the scarring was from. My dad was a smoker until three years ago when he quit, so it is unknown if such scarring was from the disease or from past smoking. There was no inflammation at this time. A few days later, he couldn't breathe properly on his own so they gave him a mask to give him extra oxygen and transported him to the Cardiac Care Unit. This was December 29th.
That night he got worse and he ended up not being able to breathe properly with the extra oxygen and so he had to go on the ventilator and was sedated on propofol. They also gave him Ativan because he kept trying to pull the tubes out upon waking up. They had him on 15 mcg of propofol in the beginning and I'm not sure of the dose of Ativan. He was completely asleep from the looks of it when we went to visit him the next day. The doctors confirmed that his lungs filled up with fluid, but are still not aware even now for sure if it was an infection such pneumonia or a fungal infection, the kidney failing, or the immune disease. They gave him three different antibiotics to make sure, along with the lower dose of steroids and the cytoxan. He started dialysis and had numerous plasma exchanges. The fluid in his lungs finally cleared completely after two weeks. After the first week, he was able to be put on CPAP mode of the vent. Luckily his heart was not affected. They did a CT scan of his brain as well as an EEG as a precaution because he was not very alert, but everything came back negative and there looked like there was nothing wrong with his brain and there is no reason to believe he would have any brain damage.
Fast forward to today, four weeks after being put on the ventilator, his lungs look good, with no fluid, still some mucus, and his kidneys are recovering (up to 30% now from 10% before) and the creatine level has been staying stable even with no dialysis for a week. He was not able to be successfully weaned because of mucus and probably dependency on the vent for so long. Last week they did a tracheotomy because he had too much mucus and did not want to risk him being too weak to cough it up and it going back into his lungs.
We were hoping then they would be able to wean him off the sedation once he had the trach put in. However, the biggest problem right now is that he is too agitated to be taken off the propofol. His heart rate starts going up to 110's, 120's when he gets agitated. My mom got so frustrated one day and demanded the nurses completely stop the propofol. When they did this he got so agitated and his blood pressure went up to 200. The highest they have had the propofol up to is 50 mcg being the highest. They have given him injections of the ativan which usually calms him down. However, a few days ago, that did not even work. He was so agitated, moving his arms and legs and looking like he was trying to beat someone up, which I read could be a sign of lack of REM sleep. They started him on an antipsychotic drug, Haldol, which seemed to calm him a bit. He is now down to 30 mcg of the propofol. However, today he was very agitated again and very restless moving around a lot. He opens his eyes and can hear sounds, but is not too responsive otherwise. They have tried to give him morphine to calm down as well, but nothing seems to be working. I am worried about how long he has been on so much sedation and we don't know the cause of what seems to be this delirium he is under. I know you can get ICU delirium and it could also be from the medication he is on. I have been reading that steroids and the chemo drug can cause this. Benzos, which I believe Ativan is, can also cause hallucinations.
We are trying to transfer him to another hospital with a special care unit that focuses on extremely complex patients and they say they specialize in getting patients weaned off the sedation and the vent. The doctors and nurses at the hospital he is at now do not seem to know why he is so agitated and do not seem to know what to do to get him off the sedation completely. We just want him to be able to wake up and get him out of this delirium. If anyone has had any type of experience like this or if you know anyone who has had this type of experience please share anything that may be helpful to calm him down. I am sorry this is so long, but I would greatly appreciate any advice. It is so sad because his body seems to be recovering, but now this delirium is causing problems
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