The ICU won't allow my friend to be transferred to another hospital

My friend (I am his Medical Power of Attorney) was hospitalized over two weeks ago for a seizure and diabetic coma. He is 57 years old. The EMS took him to the closest hospital to be stabilized, which is an ordinary general hospital. He came out of the coma beautifully 2 days later (the doctors were sure he would not make it) and was already eating almost ravenously.

He aspirated in the night and (although I don't know how long it took till the nurses found him) he was given CPR ten minutes until his heart beat again. He is now in another coma and has anoxic encephalopathy.

For the past three days I have tried EVERYTHING in my earthly power to get him into an upgraded hospital about 20 miles away that specializes in neurology, but this hospital refuses to do that for some reason.

I was in the ICU 10 hours yesterday and have tried calling every department in the hospital. I find it very strange they will not transfer him, and already last week the doctors were trying to persuade me to have hospice come in and take him off all his meds and life support (even though he is not terminal). These doctors (who are not top neurologists) are insisting he'll have no quality of life, although he is not brain dead, has gag reflex, his pupils respond slightly to light, and he has only been in a coma about 12 days today. He is still on a ventilator.

Can anyone help me? I really feel he needs to be in a hospital that specializes in brain injury, as it appears they just want to write him off. I never imagined it could be so hard to have a brain-injured person transferred to a better hospital. Right now I am his ears and voice, as he cannot speak to defend himself. Someone, please help!

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I`m sorry you have to go through all this, all of here have been there too. Can I suggest "just breathe". It is going to be a long road. There is nothing quick about a brain injury. There also is very limited things they can do to help improve the situation. To keep him stabalized right now is key. A new hospital (as good as it sounds) won`t change was has happened or is going to happen. Just try, to stay focused on the positive signs, and keep looking for more. If all goes well and he comes around and off the vent he will transfer to a rehab hospital that speicalizes in brain injury. He will have to meet certain criteria. Mary Free Bed in Grand Rapids is the one you`ll want check into. Above all, you have the right to hope.

Ruth

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Thank you so much for your very helpful insight! I agree with so much of what you say, except I've lost complete trust in this particular hospital. I've caught the doctor in so many untruths and contradictions that I don't know what to believe when she speaks. Already on the 5th day of his coma she and her colleagues were trying to pressure me to put him into hospice and off life-support due to his injury. They seem to feel he's been in a coma "long enough" and that I am prolonging his suffering. He has now been twelve days on a ventilator and needs a trach badly, and I'm trying to decide which should be my first priority - getting him to a better hospital first, or getting the trach. Unfortunately, I just read this hospital (he's currently in) ranks among the worst for deaths during routine procedures, and now I am even more afraid.

You have a good point: the new hospital (if he ever gets there) may be the same, or possibly worse, that the one he's in (though I can't imagine it)! But, yes, it is possible. I just don't know what to do, but feel very uncomfortable keeping him at this place where they feel he's better off dead.

I know brain injury takes a long, long time, but the hospital he's presently in feels he should be "awake" by now. At the same time, the doctor told me it's dangerous to transport him on a ventilator and so I'm afraid to make the wrong decision. My mind feels caught in an endless loop of doubt.

All suggestions are welcomed, indeed!!

Again, thanks!

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Have you thought about talking to a lawyer to help you get him moved? I am not saying it is not dangerous but people have been transported on vents before. Besides was it their fault that no one knew he had aspirated. How often do the nurses do their rounds? Paula

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RealLove,

You might try asking the hospital (where you would like to take your friend) for their input and suggestions on how you might accomplish this. Another hospital may be able to help you overcome the hurdles which are being put in front of you by the current hospital. Perhaps a second opinion on your friend's test results would be helpful also.

They are probably counting on you giving up - surprise them!

Best wishes!
Hope4him

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Thanks to all of you.

I took your good advice, aNewBob, and brought in a lawyer; after days of fighting, that was the magic answer! The transfer papers were signed within an hour or two!

Yes, to your question: He aspirated at their hospital and - for some reason - they did not want him to leave. They did not even want to put in a PEG feeding tube, claiming he had to much stomach fluid (ascites), but the new hospital disagrees with that assessment and are going to put the PEG tube and trach in (after almost two weeks).

Sad, it has to come to this, especially because lawyers are expensive and not everyone can afford one. Luckily, she is a friend of mine.

Yes sometimes one really needs another doctor, hospital, or second opinion, or point of view.

Thank you, Hope4Him, and let us all surprise them who tell us there is no hope!

My present situation is resolved, thanks all of you who answered me!

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I am so happy for you to have that fight behind you. My thoughts and prayers are with you.
Paula

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Thanks so much, Bob!

I also wonder why you asked if it was the hospital's fault he aspirated, as it surely began to feel they were trying to cover something up by refusing to release the patient and trying to put him into hospice. I felt like I was walking through the pages of a Robin Cook medical murder mystery novel!

I know this is only one great victory for my friend, but the larger battle still looms up ahead. His condition remains unchanged, he has only opened his eyes and moves them around sometimes. He cannot move his limbs, though sometimes tries to lift his shoulders. His pupils are only slightly responsive to light, he failed the "doll eye"test, only slight response to pain, and has a gag reflex. Can all these things change or improve?

Today the new hospital found there was seizure activity on his EEG and put him on seizure meds; I wonder if a seizure disorder could play a role in all this?

Take care, Bob, thanks so much!

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It was just a thought I had as far as the time it took for someone to find him and the way you were being treated since they were not willing to let him go to another hospital. Ecspecially one that was better equiped to handle a brain injury. It is sad to say that some of these professionals give up hope so quick. Even though they have seen miraculous things when it comes to the brain. I'm not really sure what the doll eye test is. I do not remember that ever being done with Bob. Bob never did respond to pain except a few days before he woke up. Bob never had any seizures either. But I suppose it is possible that it may have something to do with things. It probably depends on what part of the brain is being affected by the seizures. Why did the other hospital not pick up on the seizure activity? Did they ever do an EEG to see if this was happening? They should have cause seizures are not uncommon with a brain injury.
I hope things get better now that you are in the new hospital.
Paula

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Hello aNewBob!

I, too, was wondering why this relatively small hospital refused to transfer him to a bigger hospital with such an enormous injury (that their hospital was really not equipped to deal with). I, unfortunately, also caught his doctor in many untruths, amazing really. It is obvious they wanted to just put him into hospice during the first week.

He is on kidney dialysis for 6 years, and was on the ventilator from this incident, and so they kept saying he was in multiple organ failure; the doctor said she would "not want to keep her brother alive like that" (brain-injured). She tried to make me feel very guilty for keeping him alive.

I see her attitude as a stigma against one with a brain injury.

I never did get the full story of how they found him after he aspirated in their own hospital (and got undigested food into a collapsed lung), I only heard a ton of contradictions depending on who it was I spoke with.

Some claimed nurses were right there with him in the room when it happened, others said the CPR team responded immediately to code, others said they were unsure how long it took to respond to code or find him, others claimed no one was in the room, and some said they really did not know. All I know is that his heart stopped for ten minutes and during that time he at least received CPR. Of course, depending on when the code was called, it could have been much longer.

The "dolls eye" test is part of the Glasgow Scale test for anoxic encephalopathy which grades its prognosis in the first 78 hours. It has to do with clinical observations such as the patient's response to pain, gag reflex, pupils responding to light, etc. - all things that indicate the brain stem is still intact.

Dolls eyes is part of the Glasgow scale criteria, to see when the head is moved back and forth whether the eyes move with the head or not, normally as in an unaffected person. This hospital did not even do the test or give him any score, but said he does not respond to pain, his pupils responds only slightly to light, but he does have gag reflex.

Meanwhile, his eyes have opened and - after a day or two of just staring - he started to move his eyes around. This all has happened just within the past two weeks since this tragic event occurred.

He looks so lifeless just laying there, without any other movement or response, breathing so laboriously.

It is so scary.

I am trying to both be hopeful, but afraid to be too hopeful. It will be interesting to see what this new hospital says or does.

How long was Bob in the coma? Did he have any other of these responses (pupils responding to light, etc)?

My friend came into the hospital because of a second seizure after a recent fall to his head, but I was unaware that seizures are common in brain injury. Do you think seizures could effect the time it takes for them to wake up?

The other hospital (thank God he left there) only did one EEG and a cat scan.

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Hello.

My 36 year old brother was taken to a hospital on September 30, 09. He had suffered an hypoxic brain injury. I was told by the nurses to get him out of there because it was a 'bump and bruise" hospital. I knew he needed to be transfered. It was not a neuro hospital. Get the administrators involved ASAP. Call pt. advocacy and even call the admin office. Scream, yell and do whatever it takes. I finally got the name and number of a doctor and a neuro hospital. I put the the doctors intouch with eachother. It needs to be dr. to dr. We waited and waited. Then they were ready to call it off. I called the Dr. to the neuro hospital myself and begged him. FInally they accepted him and he was transfered. I was also told in this bump and bruise hospital that he should be taken to hospice and I should withdraw care. Well... yesterday was 3 months since the injury. He is still on a ventilator. BUT.. he has been smiling, crying and laughing at appropriate topics. He just responded with an OT and yesterday for the first time he moved his toes! It could be reflexes but I am having PT come to evalulate. ALSO.... I got a video camera. These doctors do not believe a word you say... SO... now they can watch for themselves. You need to be as aggressive as you can. I will keep your friend in my prayers. Try to find someone that is willing to take his case at the new hospital. See if you know anyone that works there. Keep trying and NEVER give up!
Lisa

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I really didn't read through all the other post before I posted mine. Yes.. a new hospital needs to prove that they can do something different than the one he is in. Just know that there are MANY different things that can be done. FOR example he would be more closely supervised. Maybe he wouldn't have aspirated? They have different types of scans and MRI that can be done on vent dependent individuals. Also... see if the new hospital has a SPECT scan. This is a 3d image of the brain. Good luck and keep us posted. I HAVE HAD IT WITH THESE DOCTORS!!!
Some are great.. others need to retire!

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When Bob was brought into the ER he was fighting them so they had to sedate him. That was December 17,2008. He never woke up again until the first few days into February. I do not have the exact date on hand right now. At first his eyes would open but they did not focus on anything. Then he started to track things but still ther was no focus. Then he would start to focus on you if you were up close in his face. Then one day he started to make expressions and move his eyebrows. The next day I brought a sign in and put it in front of him to read. It said "raise your eyebrows" and he did. I about fell over. Then I took his hand and asked him to squeeze, and he did. Then he moved his leg when I asked him to. Then as I was leaving his room I seen him squirming around in bed trying to talk. I told him he had to tell me. I did not know if he did not tell me. He hollered out the word no. I truely saw a miracle that day and I began to cry. While he lay in a coma he did have involuntary movements. He would move his legs and arms. He tried pulling at his trach several times. He did eventually get it pulled out. The doctor tried to put it back in but it had already healed to much so she pulled it out a few days early. After the trach was gone he started working on the feeding tube. He got that one pulled out too. They never could keep the boots that prevent foot drop on cause he kept working his feet against each other to get them off. All of this was done before he woke up. He did have movement that seemed to have no purpose but he also had movement that did have purpose. Before he woke up he did respond to pain once. But that is when they injected his ankles & shoulders with Botox. He about flew out of bed when they injected his ankles. His mouth opened like he wanted to scream but nothing came out. He never did respond to the pinching or pulling on toes though. As far as seizures affecting the time it takes to wake up it is possible I don't know. Bob never had any seizures. Talk to friend. He can hear you. Bob did say once that he heard us talking to him when he was sleeping. They are there they just are not ready or can't respond yet. The brain is very mysterious. Pray for him like there is no tomorrow and thank God for every little sign you see. Lisa's camcored idea is a good one. The doctoors will look at you like you are crazy and reading to much into it. They do not realize your loved one will act different with someone they know. Talk to your friend let him know everything is going to be ok. Tell him you know he is still there and to keep fighting no matter what he might hear from doctors or nurses.
Paula

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You are so blessed to have Bob back, who is an inspiration to us all!

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Thank You. Bob is a fighter. He has been through alot in his life. I thought we lost him again when he was started back on the meds by his mother but I see small improvements everyday. He is starting to show feelings, that he cares again. Now mama has realized that it is not fair for her to keep him there when all he wants is to be with me and his daughter. He would tell her he wanted to go home and when she would tell him he was home he would tell her no his home with Gracie. She got so tired of hearing it that she started medicating him. She even tried to tell me that Gracie and I should not come up there as often. I told her that that is not fair to punish him by keeping him away from the ones he loves. Well she eventually apologised but kept medicating him. I go up to her house 7 days a week to take care of him. He has been taken off one med by the doc and the other has been reduced. When the meds started he stopped talking in sentences to eventually saying nothing except me home. He is starting to talk more in sentences and walking a little better. Nothing like before the meds but he is slowly comming back again. In March his mother said he can come home to live with Gracie & I. She finally realized that it was not right to keep him there if he was not happy. When I told him about it his eyes lit up, he smilled and gave me a huge hug. I pray she holds true to her word.

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Thank you again, aNewBob, for all the help and encouragement! Was Bob in an "induced" coma most of the time or was he not sedated? My friend is not sedated (considered a poor sign) and responds only slightly to pain. He does not move his legs at all (the first few days his right leg was strangely turned inward) and seems to have movement (though slight) only on the left side. I remember on the first day he actually moved his arms up to pull out the breathing tube, but ever since that one time, his arms and hands are now quite still. One time, more recently, it looked as if he were trying hard to get up from the bed, as he appeared to move his whole shoulders and back right up as if he wanted to sit. Of course he only moved millimeters, but it still surprised me. Yesterday it looked as if he were moving his lips talking, with nothing coming out verbally; of course, it was the first time I saw him since the breathing vent was removed, so it may not really be improvement. It's not easy to be positive, especially when the nurse says its reflexes; then she contradicts herself and says he hears and responds more to my familiar voice than to her own. Sometimes he now clenches up his jaw and grimaces. There was a period of several days when he never closed his eyes at all - at first it was a very fixed stare, then one night I noticed his irises appeared to very slightly move. The next day he was looking all around, although vacantly. Sometimes, though, I swear his expression changed at certain words. He squeezes my hand sometimes, perhaps just a reflex? I wonder why he was breathing over 8 hours on the ventilator last week, but now only 7 breaths over the ventilator. Also, his eyes are usually shut most of the time once again. Often, there are tears that run down from his eyes - are they "real" tears? - I don't know. Sometimes he open his eyes wide and makes facial movements. Sometimes his eyes are rolled back into his head. Everyday is different and it just seems so impossible to tell if he is making any progress beyond the limits of the brain stem itself. Is it true there are no real tests for higher cerebral function? I feel so lost and confused, and am greatly touched by the kindness of everyone on this site. One more question - I was told at the first hospital that a DNR (do not resuscitate) would be best for someone in his condition (in the event his heart stopped again, causing more brain damage). Anyone have an opinion about DNR's in anoxic patients? This is all so new and confusing to me.

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I do hope you have Bob home soon!!! What kind of meds was he on that effected him so?

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Thanks for, Formybro, for the info on the spec scan! I do agree with your views! I've also "had it" - not with the patient, but the medical staff. The brighter news is that he is now in a much better and competent hospital. Not that I feel any closeness yet to anyone there, but at least I feel he is in better hands. I try to be friendly to the nurses and doctors, but at most hospitals they usually end up disliking me. I once read that is a good sign - it is not good to be too passive with doctors!

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Hello Formybro,

I am very happy to hear of the progress of your brother is making after many months. I had wished to write sooner, but have been so tired from all the stress and running. today was the first day I've posted in awhile. When did your brother start responding appropriately with laughter, etc.? I am so happy he moved his toes! My friend does not move his feet at all, and I feared he was paralyzed (a fear one of the doctors put into my head), but I feel a lo better now, knowing it also took your brother awhile. My friend is also still on a ventilator, and he regressed from breathing over 8 hours on his own (on the vent) to only 7 breaths over the vent. Scary, everything feels so scary. It has only been a little over two weeks and I fear for his life. A video camera is a great idea, because I know, it is a rare nurse or doctor who will believe a single thing.

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Bob was on Thorazine. He is still on lorazapam but slowly being weened off. They are awful. He makes these awful looking faces at times that look like he is filled with tremendous torture. I hate to see him like this. When he woke he had memory problems (he knew who everyone was) He talked but you would really have to listen to understand him and he was weak.

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I think Lorazepam is an anti-anxiety drug but don't know about Torazine or why they'd prescribe them. Oh, that reminds me, my friend was put on Risperidone during a very recent hospitalization (just prior to the anoxic event) for a seizure and diabetic coma. When I looked up that drug, I found out it was for Schizophrenics!!!! Of course, the medical world covered it by saying the drug had other uses (my friend is NOT schizophrenic nor in any way psychotic)!!! Ever since taking that drug (unless it was a coincidence, as he also had a bad fall) he's had almost every single side effect: another seizure, uncontrollable diabetes, heart arrhythmia, worsening kidney function and, now, another coma (anoxic). Really makes you wonder what they are thinking!

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