ICU acquired weakness, pancreatitis nightmare

Hi, I'm new here. Found this site while looking for information about ICUAW. All I've been able to find is written in technical medical jargon, which I can't make sense of. I'll start from the beginning, and try not to go on for too long...

Back in November, my 44 year old brother went in for emergency hernia surgery. He had an incarcerated bowel, and it was necessary to cut out about an inch of his bowel, and resection it. He became combative while coming out of anesthesia, but we were told that the operation went as planned. He was discharged from the hospital the following afternoon, with no aftercare instructions, having never seen the doctor again after the surgery, and stayed at our parents house that night.

He was in a lot of pain all night, which we all thought was probably normal because of the surgery. At 5:00 the following morning, he woke my parents up, in excruciating pain. His belly was protruding like he was 9 months pregnant, and by the time they got to the E.R., he couldn't even walk. Some tests were performed, and he had a CT scan, which indicated that his bowel was twisted, and he was told that he would need to have his stomach pumped.

A nurse attempted to intubate him with an NG tube, but he vomited, and aspirated some of the vomit, immediately. The vomit was black, looked like coffee grounds. So, they gave him a shot to calm him down. Instead of calming him down, he became combative, as he had after the surgery a coupole days earlier, at the same hospital. So, they tried to calm him down again, with another shot of the same drug (fentanyl?). This, of course, only made things worse. It was at this point that our mother called and had me come to the hospital, hoping that I could help calm him down. By the time I arrived, about 15 minutes later, they had given him a third shot of the same thing for good measure.

When I got there, he was kicking and screaming, and demanding to leave. They had put mittens, looked like boxing gloves, on his hands. He was out of his mind from all the drugs they had given him. Things were escalating rather quickly, security guards were called in, our dad and I were trying to hold his legs so he didn't hurt anyone, while mom tried to calm him down. Eventually, the security guards strapped his arms and legs to the bed, and a nurse injected haldol into his arm, despite his attempts to refuse it. He has never had any psych problems, or meds, as some people have assumed because he was trying to refuse to be injected with haldol. The haldol didn't take effect right away, I presume because of all the other stuff they had pumped into him that made him crazy, and they attempted to insert the N.G. tube again while he was restrainer and still somewhat combative. He immediately projectile vomited coffee grounds again, and aspirated some more. He was screaming "Help, they're waterboarding me!," h\and his oxygen level started to drop.

We told him to take some deep breaths, and his oxygen level started to climb back up to normal, and shortly after that he passed out. At this point, an E.R. doctor told us that, now that he had calmed down, they would have no problem intubating him, and suggested that we go get some dinner, and they would have him intubated and in a room upstairs by the time we got back. This is the first time I had seen any doctors at all since I got there.

So, mom went home, dad and I went to get some dinner up the street. When we got back, he was still in the E.R. He was flat on his back, still in restraints. His eyes were rolled back in his head, he was on a respirator with a tube down his throat, and there was a sense of urgency in the room. The doctor came up, and said that he had aspiration pneumonia. Apparently when they tried to intubate him, they didn't expect him so much vomiting. Somehow, they let the suction get clogged, and had no back up plan, so they just went ahead and let him inhale two lungs full of the septic vomit that was the result of the twisted bowel. We called mom. She was very upset, as we all were.

Shortly after she arrived, an intensivist informed us of the severity of the situation, which we already knew, but it was nice that he took the time to talk to us. They were attempting to get him stabilized, but his oxygen levels kept dropping, and it was pretty hectic in the E.R. for a couple more hours, until they got him up to the ICU. We all went to my parent's house to get some sleep shortly after, as we were all exhausted.

The intensivist called quite early next morning. His oxygen levels had been dropping all night, and we hurried back to the hospital. His condition got was getting worse, and that afternoon the doctor told us that they had done all they could do at that point to save him, but as a last ditch effort they could try hooking him to an ECMO machine, which would bypass his lungs and heart, oxygenate his blood artificially, so his lungs would have a chance to heal. He didn't seem to have very high hopes, and gave him about 20% chance to live at that point. By the time he went in for surgery, his oxygen level was below 30%.

Well, the ECMO machine worked, and almost a month later he came out of sedation, and miraculously he was able to speak almost right away, despite having a trache tube, and being on a ventilator, he forced himself to say a couple words. They put in a speaking valve, and he was talking fine, no apparent brain damage, thank God!

Unfortunately, his muscles were so weak that he was basically paralyzed, and he was having night terrors, as a result of all the hallucinations he had while he was sedated, and his general health was somewhat poor. Multiple organs had failed due to septic shock, but they all seem to have healed at this point, although he still has pancreatitis.

The problems he has now are weakness, he gets very scared and depressed, probably from PTSD, and they've given him so much dilaudid that he seems to be addicted to pain killers. They discharged him from the hospital, sent him to nursing home right before Christmas. On Christmas morning, he was admitted to a different hospital for pancreatitis, which was diagnosed for the first time. A month later, he was discharged to a nursing home again, where he stayed for a couple weeks, before being admitted to the hospital again for pancreatitis for another month, and sent to a different nursing home for another couple weeks...

He is regaining some strength, can move his right hand and arm pretty well, his left hand is still pretty weak but he can move it ok. He can lift his legs off the bed, and with help he has been able to stand up a couple times. Last week he was admitted to the hospital again for pancreatitis. The doctor discharged him after a couple days and acted like he was a drug addict, just trying to get high. He went back to nursing home, still in a lot of pain, still vomiting, and having uncontrollable diarrhea. The next day he had to go back to the E.R., at the same hospital, and was admitted again for pancreatitis.

I spoke with a friend of mine whose sister is a very well respected internist in another state last night. Her sister said that his pancreatitis would only get better if he was in the hospital, where they could do daily blood tests, and adjust his medications constantly until it finally gets better, and that this is going to happen again and again if they keep sending him to nursing homes. His insurance apparently wont cover such a long hospital stay, so they keep forcing him to be discharged. It's a big mess.

He has never had any problems with drugs or alcohol before. If he is addicted to pain killers, it's because doctors have prescribed so many of them, and it doesn't seem right for the doctor to discharge him for asking for pain killers when he has pancreatitis, which is a very painful condition. It seems like the insurance company has way too much control over his care, and we don't know what to do. He is getting more and more depressed all the time, and showing less interest in getting better everyday. I'm afraid he's ready to give up. Any ideas or advice is welcome, especially from anyone who has been in a similar situation, as he feels like he's the only one who's ever been through this. All the nurses and doctors who have heard his story are amazed, like they've never heard of such a thing.

Sorry for going on for so long, thanks for all your help.


3 Replies

  • Dave,

    I am so sorry to hear your and your brother's story.

    You have written in great detail and it's almost unbelievable what you, your brother and your parents have endured.

    I am an ICU nurse and I have not been there myself as a Patient, however it's heartbreaking to find how your brother and your family has been dealt with.

    It's appalling to find that your brother ended up in a nursing home after a "hernia repair" that obviously went horribly wrong.

    I can' believe that he aspirated twice and ended up on ECMO for nearly a month.

    It's a horror story and I believe that your family should make the hospital responsible for all the issues.

    I know that's not going to help your brother in the short term, however in the long term.

    What I can do for you Dave is pointing you towards a series of articles from a lady who's mother was in Intensive Care for nearly 3 months on ECMO for lung failure as well. She describes her pain and frustration vividly and she also goes on to then describing her relief after her mother's condition improved.

    Here are links to the articles

    My Mum has been in ICU for three weeks now and she is on ECMO for ARDS! Will she SURVIVE?(PART 1)

    My Mum has been in ICU for three weeks now and she is on ECMO for ARDS! Will she SURVIVE? (PART 2)

    Other parts of the question you can access here

    The lady has also been interviewed and shared her story here

    Podcast with Ellie, who’s MUM has been in Intensive Care for more than 3 months on ECMO for ARDS! Listen to Ellie’s story and how she overcame most of the challenges! (PART2)

    Podcast with Ellie who’s MUM has been in Intensive Care for 6 weeks on ECMO for ARDS! Listen to Ellie’s story and how she overcame most of the challenges! (PART1)

    Maybe you can get in touch with this lady and she can share her insights with you and help you in the process of getting your brother back on his feed.

    Dave, don't give up, there must be help out there in this difficult situation for you and your family and I know that people from this community will be willing to advice as well.

    Take care and all the best

  • Hi, thanks for replying, the links are helpful for sure. I was a bit unclear about the ECMO, he was only on it for about a week, but he was in an induced coma for a month. He's not in ICU anymore, but he's still extremely weak, and he's terribly depressed, having panic attacks all the time, and we can't get him to do any exercises at all when PT isn't there. It seems like he's given up at this point. Back in January when they first put him in a wheelchair he took off on his own, but he's been in and out of the hospital several times since then, and at the last nursing home he was in, he wouldn't even try to move the whrelchair by himself. He's back in the hospital now.

    Do you think it's possible that we spend too much time with him? Between my parents and I, we're there about 15 hours a day, maybe more.



  • I would say that it depends on your brother's personality and also the situation he's in. I would argue that it's just as important to look after your self than it is to look after your brother.

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