Living Nightmare

You are so right Judy, what a long and tiring journey this is. Your life as you once knew it just went out the window poof just like that. Will life ever be normal again?

Thank you Maes, I do whisper those words in her ears and I know that she hears my words when I tell her that I love her and to keep hanging in there and that she will get through this and that she is not alone, she has people like you praying for her which is comforting to know that you a perfect stranger care enough to pray for my Nicole, that is so wonderful Maes and I really appreciate it no matter what. I will keep you all updated with Nicole!

Thank you Seenie, I know you care because I feel it. Nicole was okay today but she had to be suctioned and they have her breathing on her on until midnight tonight. I could hear the congestion in her chest and the faces she made were heartbreaking to see. Hopefully she will breathe on her own for a very long time.

Hey Diane,
By no means am I being flippant with my next comments and I commend you for your input with your daughter, but in amongst all of this and as hard as it maybe you also need to take care of yourself. Nicole is in the best place possible and she is obviously receiving the care she needs, but if you keep “burning the candle at both ends” you will burn out and that is the last thing any member of you family needs or any of us wants. As others here have stated we are here to support you in any way we can but you NEED to take some time out for YOU. I completely understand your desire to be there for your daughter but if you burn yourself out now whilst she is in hospital, you will have no energy for when she is outside of that environment. Please consider yourself, take some time, somewhere to recharge your own batteries. You will thank your lucky stars if you are able to have some ‘me time’ in amongst all of this, that I can guarantee you.

Merl from Moderator Support

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Yes indeed, Diane, life does get normal again, although it is a new normal. I liken it to having a baby: life eventually renorms, but in a new place.

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Great Day Diane,
feel like you are having the"worry thing again", let those troubles be written and after throw it away. because Nicole is moving forward to complete her mission. ‘this is to survive’. we won’t win if we have doubt. we have to stay on, what we are expecting to happen’that is life with nicole again’. by the my novena is half way finished i will pass this novena to you so it wont stop the cycle for Nicole though you can share it too for everyone who thinks they needs it.
Hey,don’t be a worrier but a warrior thats much better.**

LOVE LOTS
Maes

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Today I took your advice and stayed home, called the hospital several times and all is well with Nicole, they are still waiting for the Civic hospital to respond to whether or not Nicole has any metal in her head in order to give her an MRI?

Hi Diane, I’ve been quietly following your story. I’m a rupture survivor, still having issues 7 years later. So very moved by what you and your family have been through. I agree with Merl. You need to rest and take time out. You need to do it for your daughter. I know I’m not the only quiet follower of your story. Like me, there has to be others who don’t know what to say. But we are sending prayers and healing energy to you and your family. Take care!

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Thank you Lee, I understand about the quiet part and I vent a lot on you guys, maybe too much but I need to do this for my own sanity. I do not know where my daughter is at right now, I see her in the chair, in the bed, her eyes are open but she can’t talk. Sometimes her hands and arms are so cold I want to put a heated blanket over her there’s so much we don’t know about the brain and what it can do. She was doing okay in the beginning, even talking a bit and calling me mom and she could wave bye to me, this was after the coiling but several weeks after the coiled aneurysm ruptured again, how can that be I keep telling myself, it’s not fair, life is not fair. Then they clipped it and she was not the same after the clipping and all the head drains and all the shunts, the pneumonia, the infections, she was not very lucky but now at least her eyes can open and close, and her body moves around in bed a bit when we touch her feet or her legs she reacts to the touch. Prayers are always welcome, thank you my friend and I’m sorry that you are still having issues 7 years later and I hope that you are surrounded by people who love you and support you in your life’s journey, I know that it’s not an easy one, prayers to you right back!

Diane, we are happy to listen. We’re indescribably sad about what has happened to Nicole, and I think I speak for everyone here when I say that we admire your strength, your courage and your steadfastness. Talk, Diane, vent, tell your story as many times as you need to. We are here. Many of us here are silently “listening” to your story, sharing your pain, praying. We are here.

Seenie

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Yes, I agree with Seenie. Vent all you want Diane, as much as you need to.

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Pleasant Day Diane, Thank you for making it possible. in these case you have seem how your house now. we mother’s are a multi-tasker,we can do everything and anything because of “love” that sometimes we forget the important things that needs to be “first”. Nicole is going to be alright now, you have put her in the right care with people compassionately working for her.
Nicole might not be doing anything now, But everything is in God Time. she will be responding soon I bet. As my daugther is tell’s me then “Go with the flow mommy”.
Don’t consume your time thinking about her MRI. with or without that,she still be recovering thats for sure.I wont stop this faith for nicole not unless you had surrender the flag down.
Truth is I am truely concerned for your health and to your husband too,please take a lot of rest,our mind, body and soul should be refreshed too. it’s holy week and tommow is GOOD FRIDAY, Give your self a break, we got to reflect and pray.

LOVE LOTS
Maes

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Thank you Seenie and everyone.

Today she started opening her mouth at me and her tongue started coming out? Funny thing is that 15 or 20 minutes before I had asked her to do just that, wonder if she was responding to me only later?? Any ideas? I congratulated her and told her to never give up and to hurry up and come back to us. The nurses must think I’m crazy but I talk to her a lot, good for Nick and good for me at the same time. Don’t have any results about the MRI yet, nurse said the doctor would tell let me know if there was a problem, we’ll keep our fingers crossed. Thank you all for caring!

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Thank you Maes you always say the nicest things to encourage me. It’s been a little over 5 months now and all over the internet they talk about different kinds of vegetative states and I was told she was in a persistent vegetative state and would probably not get any better than what she is now. The only way go is with the flow like your daughter told you. I think I will stop looking for answers on the internet, too much is out there you don’t know what’s real anymore.

Happy Easter to you and your family and to all the people in this wonderful group that have shared their aneurysm voyage!

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HI Diane, thank you for the update on Nicole. When my husband was in the early stages of recovery his thought processes were so slow that I assumed he wasn’t answering my questions. I would be on to the next thing before he answered the last. You may be on to something.

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Diane, I hope that you are getting some rest, enjoying a bit of sunshine, and finding strength in the spirit of hope and renewal that is part of this season.

All the best to you, to your family, and of course to your beautiful Nicole.

Seenie from ModSupport

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Good Day Diane,
just sharing all that i had gone through before to you. I’m always here to help give tips on recovering Annie.
Honestly it was very tiring and at some point I meet frustration too that makes me feel so hopeless then. I was in a “vegetative state” too. My EYES were the only PART OF MY WHOLE BODY THAT I CAN MANAGE TO MOVE. So if Nicole can do this blinking,rolling,close and open her eyes too there is a lot for her in the future too.
My journey wasn’t easy,had lots of pain encountered during recovery. My Dr. also told my family that I not going to “DO” or in short I’m going to end up in bed and just wait for my death. But my Mother and Husband are doubtful with my Dr.'s belief.
My mother has great faith in me that I would gain strenght and would get back to normal. Well here I am now, sometimes I’m making jokes on her. Laughing her heart out like before my Annie struck. To see her laugh with my family is a heaven for me.
Diane, you don’t have to do anything that cosumes your own energy just to know the thing for recovering from Aneurysm on the net and also with the status Nicole is into right now you can’t find that because YOU already found us.
We are here to give you tips and some of us had been on the same shoes like Nicole. I my self had the very same dilemma then, but if you can see me now you wouldn’t believe what are the things that i had been through before. As I keep on telling every one on this community and even in person. Put God First,Have faith and he will give you the best result.
From the operating table before I close my eyes I just pray to God that I surrender my life as it was just being borrowed, After waking up from the COMA I thank him for I can see how wonderful my journey while sleeping, He show me everything in my past that needs to be corrected (attitude towards to others because then I was a snob I don’t care much about feelings) and while in recovering my ordeal needs a lot of “patient from both part me and my caregiver which is my husband sometimes my family”. to sum it all it’s LOVE AND COMPASSION is the key to full recovery.
WE CARE NOT ONLY FOR YOU BUT FOR THE WHOLE TEAM NICOLE.“GO FOR YOUR GOAL”. Before I forgot from the “VEGE” STAGE NOW I’M WALKING SLOWLY 15 YEARS NOW STILL MY ABILITY TO WALK MAKES ME LOW, BUT OFCOURSE IT’S A BLESSING TO HAVE A SECOND LIFE."
LIFE IS SHORT MAKE MEMORIES, MAKE IT EASY ON YOUR SELF. THIS IS WHAT I LEARNED.
HOPE I HAD GAVE YOU SOME SHADE OF BLUE. GOD BLESS MORE TO SHARE

LOVE LOTS
Maes

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Hi Judy, thank you for the information about your husband in his early stages of recovery, was he also in a vegetative state like Nicole, she follows voices with her eyes but not all the time. It will be 6 months on April 23rd and I’m really beginning to worry about the time? You are right I also think I may be onto something, it’s just a little shred of a something but at least it’s something positive for a change. I’m also worried about her breathing problems she’s on the ventilator on and off throughout the day, they tell me it’s her brain doing this?

Thank you Maes for your beautiful letters, you inspire me especially today when I’m really in a dark place and am questioning my own decisions. It’s been over 5 months now for Nicole and I think the nurse put a little damper on my hopes yesterday and that’s why I’m feeling this way today. She said that Nicole did not have much chance for recovery from what she had seen from her 10 years of experience as an ICU nurse, she said maybe if she were younger like 20 or younger, she might be okay but since she was over 50 she is kind of old and the brain does not repair itself at that age. I already knew that younger brains fix themselves faster but I thought older brains were also capable of repairing themselves only it takes lots more time, maybe years? The nurse also added “but we never know” and I of course agreed with her on that one, she is not God is she Maes. You have a great Easter weekend with your family and enjoy your life with them, you are very lucky person to have so much support. My support is all of you and that’s about it! Thanks for caring guys xoxo

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Hello Diane,

My name is Dhanashree and I’m from India. I have been following your post for quite a while now. I had found comfort in this place too after my mother suffered a ruptured aneurysm almost 10 months ago. I can totally understand what you are going through as my mum was also in more or less same condition at her 5 month mark with infections and what not and I remember posting here as I was like you very scared, frustrated, confused, worried and all of those. The doctors and maybe the entire medical world are just notoriously pessimistic and I know how adversely their words affect us as I have been there. But we as a family just decided to stay positive and be there for my mum and not let it affect us as that would have made it very difficult for us to be able to be around her. If I may I would like to tell you to have faith and hang in there. Nicole will definitely get better slowly but surely. My mum now is showing great progress she is moving more and more and her trache has come out and she has started to stay a little more awake and has gotten more aware.
I’m sure Nicole will slowly start responding more and more and you’ll have happy days coming your way too.

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