I’m the mother and I’m talking for my daughter Nicole who suffered a ruptured brain aneurysm on October 23, 2017. She was alone at the time and called 911 herself. The hospital finally reached me to tell me that my daughter was there and that she was unconscious. When I got there the doctor came to see me to brief me on the situation and told me it was quite serious. That night my daughter was sent to Ottawa Civic Hospital because they are better equipped to handle such cases. They did CTscans and MRI and saw that she needed to have the aneurysm coiled which they did. After the coiling things seemed to get better for her, she was breathing on her own, they had removed the ventilator and she had a feeding tube in her nose. After a few weeks the troubles started, she had vasospasm and once they fixed that problem she was due to have a shunt put into her head for the water accumulation in her head. When the day came to have her shunt put in she suffered a stroke and the doctor performed a clipping. She then had her feeding tube put directly into her stomach and because she had trouble breathing again she had to be on a ventilator and they later performed a tracheometry to place a breathing tube. Her head drain started to not work properly, she had several infections, and on top of all that had pneumonia. So now here we are January 2nd, my daughters eyes are open not all day but often and she can move her feet, there is movements of her body from time to time and her face too but not much. I don’t know if she hears me, sometimes I think she does but I’m not sure? One nurse said she had a score of 6 on the Glasgow coma scale. Some of the doctors say she is badly brain damaged and this is as good as it gets and perhaps I should start thinking about what she wants, and talk about quality of life etc. Well my problem with that is that when I visit her every day since October for an average of 6 hours a day I see her breathing a bit fast but breathing just the same, her heart rate is also fast but beating just the same, her hand is warm and I can hold it. I talk to her and try to get some sort of response like a hand squeeze but so far no hand squeezing but her eyes tell me that she can hear me but she can’t move. Did anybody ever live through something like this? The doctors seem to be telling me to allow them to stop treatment and just let her die, I have a problem with that.
Hello,
I’m MAES and had survived My ANNIE, this is more of what my husband tells me when I was still in a coma for 2months and the time were my Nuero Dr. told him that they will cut “ALL” meds and stuff that makes me breath or live, you know what I mean. And I saw my mother crying when she visits me to say goodbye…
Everything was in place but miracles and prayer help me…
You have said that She might hear you"the answer is yes she really hear and feel you.
try to have a radio by the bed side…by this she can slowly can recover.
please Don`t Give up on her It’s only a challenge for her to fight for and with your help.
I Will include her on my prayer for her recovery.
I Will give you some tips too so you could understand her needs.
I Need her name so i can call her name on my list of soul. thanks for taking time to write here.
God Bless You
Your daughter has been through a lot. My wife had a ruptured aneurysm six years ago. I would say your daughter’s symptoms are similar to what my wife experienced. The difference is that my wife didn’t have some of the complications, and the time frame for the complications and symptoms was shorter. The doctors we had in Denver, Colorado, were excellent–I can’t say enough good about them. They never discouraged us from going forward. You have to make your own decisions, but I think you are right to push for life and recovery. I would encourage you to demand the best effort from your doctors. I will pray for you.
Thank you very much for your encouragement for my daughter to recover. As you know this is one of the most devastating health problem one could get because if you don’t die immediately after you get it you spend months trying to recover in a hospital, most days are not great and progress is really slow. Right now Nicole my daughter is in NACU and is still paralyzed or in a coma from the neck down to her ankles, and this is the 6th time that she goes from ICU to NACU (Neuro Acute Care Unit)
Thanks for telling me that I am probably right to push for life and recovery because I firmly believe that they don’t know what to expect because they can’t tell me exactly how she will be after, nobody knows they just say it takes time and keep telling me she is brain damaged. Right now she had a new shunt put in a few weeks ago and it never worked, and the doctor told me he would put another one in but did not know when he would do it, he made me think that it would be this week but he does not seem to rush it. Hopefully this time the shunt will work properly and in the meantime he put another head drain into her brain, forget what you call that the water from her brain goes into a bag next to her bed and the nurses are always checking it. Right now the water is pinkish because even the head drain blocked on my daughter last week for a few days, then it suddenly unblocked there was apparently a blood cloth that was blocking the tube. So many complications here, I am at my wits end because of my ignorance of medicine but I do thank you for your prompt reply. Your email and all the others that are sending encouraging messages really help me and my family. There is always hope in my book. Thanks again, I will keep you informed of her progress.
It was nice for you to write back. I know your heart is full right now. We were living in Montana when my wife had hers (now we are retired living in Arizona). Hers came unexpectedly. In twenty hours we had been airlifted to Denver to Swedish Hospital 600 miles from home. She was a 5 on the scale they used which meant the worst. The people at our home hospital did not expect her to live through the night. But after 7 plus weeks she returned home with a walker (which she no longer uses) and today is living life to the full. Her biggest handicap is walking; she must walk slowly unless she is at home. Changes in walking surfaces are difficult. She cannot walk and look to the side, etc., so walking among people is difficult. But she returned to teaching piano, and she plays piano well, as she did before. She lost all her abilities and learned them back again. She had many excellent people to help her along the way (and to help us) from doctors to nurses to therapists. We wouldn’t wish any of this on anyone, but God blessed us through it. Your daughter is in a very difficult spot. Her doctors owe her their best effort to bring her back.
Thank you I can tell that your wife has been to hell and back (excuse the expression) my daughter is a 6 on the scale 15 being the highest (best). Hopefully her artistic talent will come back but I’m afraid as a hairdresser she will probably never go back to the salon. When I saw her today there was no changes except that she was awake for a longer period (eyes open) but no hand squeezing yet. The nurse said the doctor dropped in this morning but had nothing planned for the day then he left. She is supposed to have her shunt operation but I don’t know when that will be and I don’t know whether a 2nd shunt will help or not since the first one did not work and is still in her head. Right now she has a head drain, and she is breathing on her own through a trach. Hopefully some real changes will be happening soon.
Thank you Maes, thank God you recovered from your aneurysm. I am certain that my daughter hears me and will never give up on her. I could never make that kind of decision for anybody. It is very long process and it’s up to the nurses and doctors to do everything in their power to save her, all I can do is go to the hospital, talk to my daughter (Nicole is her name) and tell her that I love her and want her to come back to the world of the living. I know she is probably trying her best but right now she cannot move anything except her eyes and her feet. When the nurses reposition her she moves around and stretches. Where there is life there is always hope. Please do give me tips because I will certainly use them. I gave her a radio and told the nurses that she likes music and put in on her pillow for her to listen to. I hope the radio is on when I am not there? Someone suggested that I write in a diary and leave it there for the staff to write things about my daughter in it, I think that is an excellent idea and will be doing that tomorrow. Take care of yourself, I’m very glad that you survived this dreadful disease. My name is Diane
My names Rachel and I’m 22 yrs old. My mom had a ruptured aneurysm May 6th, 2017 and she wasn’t awake fully for 3 months. She also had vaso spasms, a shunt, a stroke on her right side and trache put in. We weren’t getting any sign of life from her for a while and finally she would move her feet a little bit and sometime squeeze hands when we asked. She can definitely hear you. I woke in a journal for my mom every day so she knew what she missed and knew how we were all there for her and still are. The shunt helped my mom significantly because once she had it made her much less “foggy” per say and she actually started waking more. My mom’s doctors told us it was very bad and serious injury closely related to being in a terrible car accident, but they never gave up on her and neither did we. My mom finally got home the week before Thanksgiving after months of rehab and it still doing rehab at home and will soon be going to outpatient therapy. Do not give up on her she is fighting and it really does take time. My mom is still healing and has a long way to go. It’s not a quick process at all. I will be praying for her and your family!!
Hello,Tommorow Sunday as planned we are going to visit Pedre Pio Church, thank you for giving in your daughters name so I could include her on my list to pray for. After surving my ANNIE I’ve been more faithful in HIM.
Though not really to tell but deep in my heart when ,I pray for all who is suffering from pain and anything that can ease their burden.You should also be calm as I can feel you are, because you might get stressed too, ofcourse your daugther does`nt want this right, she can feel you I know been there she can actually see,feel and hear you.
your daughter is fighting and as much as she can/ she will surpass this challenge by you she’ll make it I’m sure just be positive, (tip) you said that only few that she can do now but can’t squeeze, You can teach her by doing it to her so she can remember.Slowly everyday you visits. I can still remember when my mom visits me she always give me her schedule for her day, and our goodbye’s are a squeeze at the hand where my ANNIE hits me. Hope more of your Daughter’s update. I’m sure by 2 to 3 months time everything will be smooth sailing as the music say.
Thank you Rachel I’m glad your mum is doing so great. I will certainly never give up on my daughter Nicole. We are not a big family just the 4 of us, my husband, Nicole, Ben her son and me. So we have to fight for her life. I cannot spend all day at the hospital like I did for the first 2 months but I do go every day for a few hours, I hold her hand and show her how to squeeze and I will keep on doing it until I get a response from her only then will I know that she will be okay. I think you are all right in saying that she can hear me at least I hope so. Today I will bring a diary and leave it on the table for the staff to write anything they like in there and I will also bring a book and read to her. I have been showing her pictures when she is awake and her eyes seem to move to look at them. My husband also talks to her on the telephone and lately her son talks to her on the phone, but I have to be at the other end holding the phone, have not asked the nurse to do that, don’t know that they would, I will ask them. Thank you all for your prayers, hope your mom is well soon, and you are right it is a very long and slow process, like they used to tell me at the hospital slow baby steps.
Thank you Maes, Hope things will be a lot better soon, on the 23rd of January it will be 3 months. She still has not had the shunt replaced yet and is still on her exterior shunt. I’m really afraid of this shunt replacement because it is another operation into her brain and I’m afraid that the little progress she has made since they first put the non working shunt in her head will take her back to square one? I’m almost tempted to tell them no shunt operation pleaseeeee…I am trying to stay positive and I do squeeze her hand and I will do as you say squeeze her hand for her, I have done this a few times, but not enough. Thanks for caring!
I am worried about her lungs since she had that trach put into her throat, she seems to be congested all the time and they have to manually intervene to get the mucus out by pulling on this long plastic tube somehow. I can see that my daughter does not like it because she seems to gag when they do this to her. She has been breathing on her own for 7 days now and I’m wondering when they can take this trach out of her throat, they don’t seem to know which worries me. Today she had an old friend visit her and I swear it did her some good, her face looked happier she seemed to be smiling a bit, this is hard to explain but I know my daughter’s face when she is happy, something in her eyes seem to light up. This made me so happy I wanted to cry and I even told the nurse who just nodded as if she didn’t believe me? I left the room so her friend could talk with her without me being there and I really think this visit did her some good, she seemed more relax after her friend told her she would come back and visit.
The doctor took some CSF (spinal fluid) for testing today and I don’t know why? The nurse did not know either? Perhaps it’s related to the new shunt operation she is waiting for? This worries me a lot because she seems to be doing better since she’s been out of ICU except for the mucus, I’m afraid that if they operate she will go back to what she was a week ago, unable to breathe on her own, heart racing, round and round and here we go again, it just never seems to end. Nicole takes a step forward and then she goes back 2 steps.
Has anybody ever had 2 shunts put in their head before and how did that go for them. Also has anybody had problems with breathing after the trach was put in their throats?
Sorry I seem to be all over the place with this post, but I’m Nicole’s mom and I worry about her, she is the only daughter that I have plus her son also needs her to come back home, he is also very worried about her, today he will be sleeping at the hospital again, just to make sure she is okay.
Thank you for caring and for all your posts, I read lots of them especially the ones that are similar to my Nicole.
Hi Mrs.D, I had a wonderful day today. Visiting A miraculous church as if God is near and touching who ever pray and had wishes to be granted. I maybe I’m just too “supernatural”, this is because of all the people in that ground / where their are pigeon running and flying frighten of people might hurt them. But as the mass is on I had 3 encounter of a pigeon trying to get close to me, the second one is so close but a child want to touch him that flew away…
I even pray that if a multi-colored one would just walk in front of me I know that my prayers will be answerd soon.
I know that you are troubled by your Daughters situation now, but sooner she will get better.
And about the shunts it is really given in on 2’s this is because her “first” shunt is to drain the clot on her head and the second is water to flush or cleans every part which her ANNIE surface it…(actually all this was just told by my husband,he’s the one talking to my Dr.Everyday that’s why I can share it to all. In this face he was like you then, Worried and wondering…What will happen next etc. It is A Normal to All Mothers I should say,Having Annie is one “blast that only the choosen one can survive” as my PT friend tells us on her session then.
A Mother alway’s come just to give care and comforting arm`s to make sure of their child welfare. I understand you clearly, and yes the trach your saying it is really bothering me before, I really try hard to make them see that I can breath alone without the help of it. To give you a tip for this alway’s tell your daugther that she is the one that will tell her Dr. to trying to remove it little by little until she can do it all along.I’m not telling this but I know your Daughter will also “WIN” our battle. like me doing the things like before "but with precautions on the foods we eat.
Keeping you in my prayer, we will do this.
I’m here with you all the way to recovery,
MAES
My mom also had the trache and they would use the plastic tube to get mucus out too. It was not a pretty sight and my mom would also gag, cough and it was very unpleasant. They like to get any mucus out so that it isn’t sitting in her throat because they don’t want any risk of sickness or infection, which is what they told us. They also said that sometimes they will have mucus and can’t cough it up so that is another way to relive them of that. My mom didn’t have a problem at all when she was taken off the trache. They weaned her off it by making the tranche smaller and smaller which is what they should do for everyone. I do that if people have a hard time getting off the trache they have rehab for it. They brought it up to us as soon as my mom had her trache put it.
They also took my mom’s spinal fluid to make sure there is not infection or blood in the fluid.
It is definitely one step forward two steps back. Hang in there!!
I met with the doctors today there were 3 of them and I did not like what they told me because they seem to think that my daughter’s condition is as good as it is going to get? I asked what would happen if they weaned her off of the trach and one doctor answered that she would die. The neuro surgeon talked about having to take the old shunt out and putting in the new one and the risks involved in anything going wrong are about 1 to 3 percent, I told him that I wanted him to put the new shunt in. I think he wanted me to tell him to never mind and leave it the way it was until she died? The neuro told me it would probably be like the first shunt he put in and not work. I repeated to him to put it in anyway and we will see. Because they say she is brain damaged so much that this is as good as it gets. One doctor was saying that I should think about my daughters quality of life and think about what she would like, that she would get many infections, and pneumonias and perhaps heart attacks. At this point I was getting very uncomfortable and again repeated that I wanted they to do everything they could to save my daughters life. The neuro had to excuse himself and left the room, he will do the operation and put in a shunt. The NACU doctors will continue to care for Nicole and do what they can if she gets infections, and any other complications. I told them that if my daughter was meant to die it should be her body that decides and not me. I asked if she was in pain and they assured me that she was not. In the beginning the doctor told me that she was not improving even a little bit, I think they are wrong but they insisted that she was not going downhill but was definitely not going uphill. I told them to give her more time and she would probably show them, they did not agree with me. I told them that I still had hope and faith and that I wanted her to have all the chances she could get. I think they will keep wanting meetings with me to try and change my mind. I also told them that they should put her in a chair and not leave her in the bed all day, they did this at one point in her care. The doctor said she was too weak, I answered he would be weak too if he was in bed for 3 months, it was not a happy meeting for me.
My grandson absolutely does not want to give up on his mother, doctors seem to want to because they say her brain is detached from her body and not functioning and never will again. I asked if she was brain dead? They all said no, I asked if she was in a coma they said that now I was going into another subject that nobody really knows much about consciousnous. I asked if she could feel, they said probably? I asked if she was in a vegetative state they said she was sort of, in other words they did not seem to have an answer when I talked about these subjects.
I asked why was she in such a state when she seemed to be doing so well a few weeks after her aneurysm. They said the coiling ruptured and she had a stroke after that. I asked why did they not clip instead of coil.
Meeting was going nowhere really except they kept going back to Nicole and her quality of life and what she wanted. I told them what I wanted and that was life for my daughter and more time to see what that would bring her. They want another meeting in about a months time and in the meantime they will keep on treating her the way they have been, medicine for infections, proper nursing care, I have no date for the operation as of yet but the neuro said next week sometime, but he said that before christmas?
Which hospital are you at? My mom was at Mercy Hospital in Buffalo, NY and they were amazing. the neuro staff there seems very negative unless there is something they aren’t telling you. My mom was in bed 3 months and then only up an hour a day after that for a while and she is till very weak in her arms. They should know that she will obviously be weak when waking up. I’m sorry that they are giving you such horrible responses and not wanting to push for her. Keep being an advocate you’re doing everything you can!
We are in a renown Canadian hospital. The neuro and staff in the beginning were all amazing as well. I just feel that something is wrong somewhere, did they make a mistake and are trying to cover it up by getting me to weaken and let my daughter go, perhaps I’m getting paranoid but I can’t help my gut feelings. I will always be on the side of life, she is breathing with her trach on her own, her eyes are open more and more, she is beginning to move her fingers a little tiny bit at a time, her feet move a lot as well as her head side to side and her body. As for being conscious of what she is doing (that is if I ask her to move a toe, she does not obey commands). This is what I am waiting for, and I will yell so loud when this happen that the whole neuro team of doctors will have to admit that they were wrong. If not well Nicole will have given a good fight for her life, and I admire her for that. I am there now and always for my baby.
What a terrible situation for you and your family to be in. I cannot imagine being confronted with anything more difficult than what you are going through now.
At the end of the day, you have to do what you feel is right, and what your daughter would want. Only you know what that is. I wish you strength as you walk this dark and tortuous path.
Sending warm hugs your way. Thank you for keeping in touch: you are very much in our thoughts.
Seenie from Moderator Support, along with Christina and TJ
You cannot imagine what I am living, today I got a telephone call from the hospital, when I saw the number I nearly jumped out of my skin, it was the physio person at the hospital. She explained to me why she could not take my daughter and put her in a chair, I then remembered that I had asked that at the meeting with the doctors and they told me she was too weak and not awake enough. Today the physio therapist told me that the team told her the same thing and that perhaps after she got her shunt put in they would attempt to put her in a chair.
She was in a chair many times before, they just stopped doing it after her second bleed from the coiling, they just let her lie there and do nothing except suction her, wash her, empty her urine bag, replace the food bag, check her head drain and empty it when needed (the cerebral spinal fluid is now clear), change her position every few hours (this is while I’m there), take her temperature, give her antibiotics and tylenol for pain if they think she needs it.
I want to know if I am allowed to have access to all the doctors and nurses reports, has anybody ever asked for this information. I know I have asked and have been given answers verbally but I find that when you are going through something like this (at least I am like this) I tend to forget what they said, especially if it’s medical terms, and some doctors talk a lot and your mind (mine) tends to wander and think about something else I want to say. Does anybody know what I mean? Yes it is very stressful and this is really a living nightmare, I just wish I could get another hospital’s opinion, can I do that?