Today I found out that they called my Fiances father to basically force him to decide to pull Tonys feeding tube out. Unfortunately for them he goes by whatever I say and he also wants the best for his son, a fighting chance. Ever since this has happened I have been more and more shocked at how the health system seems to really not care in these circumstances and it makes me so frustrated. The woman on the phone from the donor group seemed mad that he refused and also she's just waiting to get what she thinks we will give her and Im not allowing that. I felt so sick when he called me to tell me this I almost threw up. I WAS SO USPET. Right now I sit with him and researching ways to get him better care. Today makes 7 days in the coma since the accident last Thursday. He lost oxygen for 10 mins. He has anoxic brain injury and is currently on a vent and only on saline. He gets an anti seizure twice a day they literally have gotten him off of all the med which I QUESTION as well. I know they want to make room for the next person and they dont want to have him here this long. This is so heartbreaking, frustrating and hurtful . I have seen many of you come to some recovery and I will NOT LOSE HOPE
Doctors Responses and Fear : Today I found out that... - Headway
Doctors Responses and Fear
Hello, firstly I am so sorry to hear your news. Heartbreaking. I am guessing scans have been done etc the doctors feel that the prognosis is poor. Are you able to talk to the staff or are they talking to the Father. Is there any leeway to a joint discussion or chat with staff? My heart goes out to you xxxx
They already feel that he is not going to get better, and they normally discuss things with us as we are the liaison to his dad also, and he even told them to speak with us about any updates etc.. Since they spoke with my fiances father we noticed they are now less welcoming and barely notice us, since he refused to have my fiancé pulled from life support.. One nurse always came in and now she's seen me and turns the other way. I think they are mad that we are not doing what they wanted hence the call. Thanks for the kind words. The scans shows minimal activity but many people from this group have had horrible situations as well and even lost oxygen longer and they finally came out of the coma, so I have hope. Miracles do happen. It happened with my grandma 4 weeks ago hen they told me they would give her the weekend and if she didnt breathe on her own she would go, well the weekend came and she passed all her wean trials and now is still alive.
It is amazing how some people prove to be so robust and can defy the odds. I am sorry the staff seem to be ignoring you too. Sending you lots of love xxx
How heartbreaking for you. Have you asked for a one-to-one meeting with the Consultant and even to see the scans for yourself ?
It's a really emotive minefield having to consider whether survival will include quality of life ; the doctors will have clear guidlines on what constitutes a viable survival whereas we, as loved ones, have a totally different perspective.
I wish you all the strength you need to get through what must be a surreal and frightening time, and I hope you and your fiance will be given the consideration and respect you each deserve by the medics.
Thinking of you......... Cat x
They usually do rounds in the morning which I make sure to be here for and the last round we were at was two days ago. Thats when they told me they needed to do more test another EEG and to up his meds. Once they did that they told the results to his father and then subsequently asked him to decide on the removal of the tubing because "they" THOUGHT he wouldn't do any better. He has reduced to no swelling his heart and other vitals is good except he is still on the vent and barely breathing above it. But I say this to say there is always hope and a change which I feel they already basically gave up on 4 days ago when they sent out a notice for donors for my fiances brain. They had no real hope they just pacified us I believe. Either way I am doing all I can and hopefully he can come out of the coma he is now off all meds and sedation since 4/7-4/8/ So just now on one anti seizure med in the morning and one at night and just some feed, and saline.
Ty so much again CAT.
Hola - I spent 4 months and 1 week in my coma and there were doctors telling my ex wife all kinds of what turned out to be nonsense. I’m here 4 1/2 years later and I’m totally fine...keep fighting that ‘move it or lose it’ attitude of theirs that’s just ridiculous!
I have what is seen as the worst type of brain injury and more than 95% with this die and I’m ‘supposed’ to be lickin windows and be unable to walk, talk or feed myself among other things, but here I am with a physical disability in my left arm, but I still speak 3 languages natively, I walk and run, I cook everyday etc so your man could be that 1 in a million so keep by his side until he pulls through 
I’m not ‘touched by Jesus’ or a ‘sacred Saint’, but I’m alive and kickin!
Thats amazing. Yes I am hearing everything negative all the time. Your are truly lucky I only hope we are too. TY
It’s not that doctors/specialists just love being negative and get a content feeling while watching you suffer. They may be perceived by the outside world as ‘special heroes’, but in reality they have a job just like the rest of us but in their job “liability” and “heartbreak” is the norm. They see true tragedy almost every day and they’re not ‘robots’ so while thicker skinned; sadness and disappointment penetrates that shell sometimes so an ‘educated guess’ turns into ‘depressing prognosis’.
Who’s to say your lovely man won’t be that anomaly? No one.
Donna spent 12-16 hours every single day with me for over 4 months and she endured Doctor after Doctor and Specialist looking at my scans/notes telling her “I’m sorry but...”
She never lost faith and politely shrugged off their comments and said “you don’t know Markus and if there’s a way, he always finds the will”
And they don’t ‘care’ about me they just have the next patient to attend to so she tells me they nodded with blatant disbelief and just walked off.
I was just what they said I would be like at first.
I couldn’t speak, standup, walk, go to the bathroom, feed myself and gosh so many other things, but you I’m a stubborn motherfuc*er so it took seemingly forever but I piece by piece improved until I discharged 3 months ahead of schedule.
My ex wife Donna had aggressive cancer 3 times at this point and she never stopped fighting and my dad had Carcinoid Cancer (the exact same as Steve Jobs) and never for a second, no matter how painful it became, gave up on his positive nature and he lost his fight 7 years ago, but his profound nature he passed onto me and that I feel propelled me towards recovery.
In life all of us on Planet Earth face loss at some point, but death is not always inevitable so hold his hand and your positive, warm spirit may just transfer into him and help him come to.
What an awful situation. I feel so bad for you and can understand you not wanting to lose hope. Like others my advice would be to speak with the consultant, frankly and honestly. Get the answers you need and base your actions on that whether it is good or bad news. The important thing now is to do the right thing for Tony and try to ignore everyone else, including you and your feelings if you can. Noone wants to lose a loved one. But if there is little chance to recovery isn't that false hope? On the other hand miracles do happen sometimes as you say...
Yea I understand I know he would want to stay as long as there was a chance that is also why I was abit frustrated with what they all said. Some people need more time. Some people come out of comas 10 days later to 10 months he wants to live thats all I know. Im not asking for them to lie, but just as they said one thing one day things have changed and they seem to not bring up the fact that those changes even thought small are better than before thats all. Yes they do many people here are testament to that!
In 1998 I was unconscious for 2 months now I have tbi, difficulty with walking . I was in an wheelchair when I went to a rehabilitation hospital for a few years cannot remember how many. Now I am at home when I can walk using furniture so I do not loose my balance. I had physiotheapy daily for a few years now I go 3 times a year for weekly sessions.
You are doing a very positive thing so slick with. My family were told I would die but my husband said she will not she will survive to nag at me as he was doing the driving in my car accident.
Unfortunately my nasty moods have now made him file for a divorce.
You are doing the best thing for your partner when he wake he will appreciate you being by his side and showing love and hope.
Hope things workout for the two of you.
Love and respect
Mufc
Thats really great. Sorry to hear about the past but you are doing much better now and that is what counts. Thanks alot
I would be great full to know when he wakes up.
I really hope to tell you that also. Thanks
Hello HopeforTony
I am so very sorry to hear this news and just wanted to let you know that you, your fiance Tony and his family are in my thoughts and prayers. Also I send my love and hugs to you all as well.
Benxxx
TYVM thanks
Lolz 10 mins really ? Wdf mind Ma lAnguage my dad was out without oxygen for 30-45 mins he woke up after 4 weeks they sAid so much shit know in rehab he can walk talk communicate and everything just bit disability on right hand side but happy to have em not like the old active dad tho but we been there in your shoes I swear down there isn’t any worser doctors anywhere in the world than the icu they tried to kill our father by taking the plug of and then threatening us to take it to court but you know what we fought and hes here today so remember patience is everything your backs against the wall defend your self with the icu doctors they all work together I swear they are horrible people
Your loved one will wake up give em a chance look it’s happened recently like then the medications so powerful it has to wear off so sorry if I sounded rude guys but just the truth
OMG wow yea they act like were stupid for believing and having hope. Thats along Tie without oxygen though Im glad your dad is better you guys are LucKY. I WILL do whatever I have to do to keep my fiancé here. I understand what you mean thanks alot much luck to your dads continued recovery
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