I don't know if I'm writing for advice or suggestions but all I know is I'm scared and helpless. My fiance fell down the stairs last Thursday and when I got to him he was seizing at the time hurdled over in a horrible position. I was so scared and in shock I didn't realize until after that he was having seizures. I called 911 they told me to move him off the stairs lay him on his back. It looked like at one point he stopped breathing. The ambulance finally came and took us. Later on I found out he had been in cardiac arrest, he stopped breathing for 10 mins until they were able to revive him. That was the worst thing of my life and it hasn't gotten any better. As of today he has anoxic brain injury, and has still been having seizures. All other vitals are okay except hes on a vent, but his heart and lungs are fine as of now. Hes also off sedation which I wish he could just move his eyes or do something so he knows Im here. I talk to him everyday and just started playing brain music to help. I feel so helpless I've been reading up on everything related to this situation even a sleeping pill zolpridem that has gotten people from vegetative state to talking. I'm also upset because some donors want to talk with us. I'm never going to give up hope. He is all I have. No one should have to go through this but the worst part is I blame myself
I asked him to go up stairs to get the laundry bag and I feel like if I had just done it we wouldn't even be here. We just had our 9 year anniversary in Dec. Every bit of the future, marriage, kids and every thing is now a fading dream. I wish I could do something. I'm so sorry.
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HopeforTony
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I am very sorry this has happened in both of your lives. I too witnessed my spouse having a seizure, so I have some feel for what you witnessed. That is definitely a hard thing to see. Please don't blame yourself. It was an accident and not your fault. Just take it one thing at a time, one day at a time. You will learn different ways to cope with what has happened and is going on. You will be able to deal with it better as time goes on.
This is just so hard. Its always just been him and I. I keep replaying the horrific memory over and over Its horrible. I only have hope and faith and Im trying to do everything I can with recording to him, playing music, massaging, anything. I really need him to come out of this soon so they dont give him a trach he has to pull thru. thanks a lot thanks
Yes, that has got to be very tough to deal with for sure feeling like you can't help him more. Just know you are doing everything you can. I know this is very upsetting for you already. I learned a method that has helped me deal with life threatening situations (cancer, heart attack, brain injury, cardiac arrest, grand mal seizures) before, that if you can, may also help give you some sense of relief with what is going on - Here it is "Make it ok in your mind if the worst were to happen - what would you do?" Just taking my mind and feelings through those situations really gave me a sense of peace. What it did more than anything was to help me deal with the current situation as it was easier. I think it helps reduce the fear and unknown part of things way down. Wishing you peace and comfort.
So sorry to read about what's happened to Tony. You must be devastated. It is such early days, try to take each day at a time.
The main reason I'm posting is to say don't be scared of him having a trachy. Following a Subarrachnoid Brain Haemorrhage my son had a trachy, I was so scared about that but actually once he'd had it he started to pick up.
Thank you so much I really needed people to help me through this im sorry about your son, but I understand if he needs it I wont hesitate. Thanks so much
That is a beautiful photo you posted. And from the description, you two have had a romance that has already stood the test of time and are strong enough to plan to marry.
So sorry that your entire world has been turned upside down. I don't know if you have faced other medical crises with family or friends. Here are a few thoughts for your consideration. 1. On the one hand you should let yourself feel and express all the pain that this brings: I hope that you have people on whose shoulders to cry. 2. On the other hand, it would be good for your to start building a set of special emotional muscles so that you make good decisions during what may be a long road. 2a. Some people find it really helps them to study up (as you mention you are doing) on the medical information and options -- keeps you from feeling powerless and at the mercy of the doctors as well as the accident. 2b. It can also help to train yourself to stay in the present: Like watching a clock, time stretches out annoyingly when you are eager for progress; Similarly, looking back and blaming yourself for the accident only makes things worse. 2c. Accept help when offered it. You may not feel like you have room in your life for anyone else right now but you will need the support of others for some time and pushing them away now adds to your burdens and can leave you alone later. 2d. identify things that you can do that are consistent with your new daily patterns (e.g., things that you can do quietly by his bedside, short stories that do not require you to have long stretches of time and concentration). Trying to be in both the world of Tony's accident and the normal world that knows nothing about that tragic accident will be very difficult: You may want to have someone else cancel some of your normal social and professional activities.
Take comfort in your role as his advocate. Anyone in Tony's position would be so delighted to have someone like you looking out for his or her interest.
Thanks so much yes, I just love him so much he has been with me by my side through everything. More recently ive also been dealing with my grandmothers ailments since 2/25 I haven't been working because it was such a traumatic and tragic turn from her being admitted then suffering for 7 days then to be given the worst options like hospice, and a feeding tube that would only be a short term problem which would not even help the obstruction that she had in her belly, to surgery and at 93 that was a tough call. I am her POA and making that decision in itself was tough. Anyway we Made it together and she had the surgery shortly after she had life threatening pneumonia and was intubated like the next day it was horrible to see her like this. She stayed on life-support for about 8 days until they told me she couldn't stay on it more and a trach wasn't even an option. We prayed and prayed and I had to just let GOD handle it. She came off I like to think because I was there talking to her every time they did the weaning trial and thats what got her back tome. Tony was there everyday helping me, comforting me, an supporting me as always. She was able to be extubated and she was able to breathe on her own which we didn't even know how well she would manage Since then she's been moved to a long term facility which thankfully is I Made sure was close to our home and I am able to stay over whenever. I have now unfortunately been going from hospital to hospital to seem them both, its not a problem but its hard when Tony is not able to be here for me now. I see her in the morning and then see him ( like right now) afternoon to night.. I am also able to stay but we have cats so I have to make sure they are ok. Anyway my grandmothers rode to recovery has indeed been long and just today she was finally able to walk a decent distance. She has been bed bound, unable to swallow since the tube and unable to walk. She was the healthiest 93 year old prior and I constantly show pictures of her dancing and enjoying herself with us. This whole situation for me has been a living nightmare. I had my dad but my mom ( my grandmothers daughter) passed away when I was only 5 months and it just seems like my life is full of bad luck. I have most def read your advice and suggestions and I will take head to them all you are helping more than you know As of now ive asked some of my Facebook friends ( really all the real friends I have) to record themselves wishing him luck and speed to recovery and I plan to play it everyday for him. I also stared writing a diary of letters to him that I read as well. Im doing all I can and I just wish I could do more. THANK YOU SO MUCH
I am so sorry to hear what happened to you. My mum had had an anoxic brain injury from attempting to suicide. Doctors said she wouldn’t survive and told me there was no hope. All I can say to you is if you stay positive no matter what he will get better! Talk to him, play music and be by his side and you two will get through it. My mum will never be the same but at least she’s here.
TYVM. Im equally sorry to hear that about your mom also. It really is a sad and unfortunate thing. Doctors in my opinion seem to be so inhumane not all but my gosh sometimes I wonder why they even chose the profession aside from the money... I have been try for your mom to play some binaural brain music its on youtube ok. Yes I feel the same Tony stopped breathing when I got to him and then again at the hospital I just am glad hes here. GOOD LUCK AND LOVE TO U BTH
Such a shame for you both. But it's good that you've found us my dear as you'll need a safe place to share your feelings over the following weeks/months......
Whilst your fiance's brain is fighting to manage the trauma it won't have the capacity to respond normally. And it's frightening seeing a loved one unresponsive, but by hearing your voice and feeling your touch, though unable to react, he will be comforted.
5 days is a fraction of the time his brain will need before showing signs of function again so there may be a long waiting period whilst the internal healing takes place.
Keep calling him back to you so he can find his way when ready. I hope there will be encouraging signs, however slight, before too long.
Coincidentally, I've just listened to a radio programme about the power of music and its ability to stimulate every part of the brain and enhance its recovery after illness or trauma............... x
Im so eternally grateful it makes me tear with happiness that you guys are here. I didnt know where else to turn and its amazing you all care so much. I really appreciate it GREATLY. Yea maybe im rushing it you're right I AM AND WILL Thanks so much Cat
I am so so sorry that you find yourself on here but you have come to the right place. So many people on here to empathise, give advise and generally be there for you when you need. Hugs xx
First big hugs I know what it is like to find your other half in a position like that, I walking in on my OH after he had been on the floor for up to 8 hours freezing and barely breathing.
Don't I repeat do not blame yourself, it doesn't help, I had times where I thought if I had realised him not answering his phone was a sign.... etc but all it does is make you think in ways right now you cant afford to, you have to stay focused on yourself and him, this road will be a long one.
How long is it since the accident? what breathing support is he on? (i.e how much work is the vent doing for him?) if the answers are less than a week and very little do not panic it took my OH a week to "wake up" and then another month and a half to develop an awareness of being awake. With the breathing if the vent is not doing much for him and he is doing the work then that is good, the body adjusts to the vent doing the work and it takes time for them to wean someone off a vent (They may suggest a Trachy do not panic at this it is a support)
There is so much unknown at the moment and honestly you will grieve the life you could have had, you will find most loved ones of people with BI have gone through this grieving process. I know I did.
Time will tell how things will be, I hope that you are lucky in this experience like I have been and he makes a good recovery and you can continue your life together. If you have any questions about hypoxic brain injury do message me.
Im so sorry to hear that I just think everything in general has some reason to be my fault and in this particular case its just so hard not too, I felt like something was a bit off but we were both tired from visiting my grandmother every day and we were both run down. You are right just like everyone else thats said it but its just to hard to believe it. I just keep replaying the scene in my head nonstop. Its horrible. Im so glad your OH is doing much better at this time. Today literally marks a week since the accident. Im just so hopeful he will wake up. I just really need him right now to come back to me. Im writing him a letter everyday that I read to him and I keep playing the classical, binaural, and regular music he likes. Some of my facebook friends Ive asked to record their prayers or words of encouragement so I play them for him. I just at times just stare at him or try to sleep near him cause I cant sleep without him and I just dont know what to say. Thanks I will message you also. I know your OH is lucky to have you and I know you are as well thanks so much
I’m so sorry to hear this. Everything you’re feeling is ok to feel but please try not to beat yourself up with the what ifs. You’re there for him and that is what counts now. Stay strong, we’re all here for you. Lots of love.
So sorry you and your fiancé are going through this terrible time. I hope he will pull through this soon and I hope you get help while waiting for him to pull through. You have come to a great place for her and support the people on here are amazing. They helped me through my fears. Take care
I found my husband and he was in a coma and now is awake but has bouts of confusion and in in a rehab home...I blame myself as well, that if I had checked on him like I normally do instead of hanging with friends this wouldnt have happened....hugs and love. (im 33, hes 37 so were not old either)
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