Thank you Michelle, prayers are needed that’s for sure. Tonight she did not respond at all to me, I did get her to open her eyes but she did not really see me but maybe she heard me, at least I like to think so. I told the nurse about her swelling and like yesterday it did not seem to be important, I asked about the newly developed diarrhea and the C-Difficile and the nurse said they only test for that 7 days after the last test. This nurse was one of the coldest nurses I have ever seen and thank goodness she is only there for a few days. Tomorrow I will see the doctor and talk to him about my concerns. She is so swollen with water retention that I was afraid I would hurt her hand when I held it.
It’s normal to want your mom with you when you’re sick. My mother passed away when I was 20, Nicole was 3 months old and each time I get sick I think of her and then I feel better wonder why that is?
Yes I know Seenie, thank you foir listening to me, I sometimes repeat myself but it seems that lately it’s one tiny step forward and two steps back! She was breathing on her own in NACU for one whole month then she got infections and she’s has to start all over again in ICU. I can tell that she is getting weaker, so sad to see this! Thank you all for your support, it is appreciated! Diane
Hi Diane, it is so hard when you don’t see the improvements you want and when things are going in the wrong direction. My husband was in and out of a coma for a month before they figured out why he would not stay conscious. Add hospital-caught infections on top and it’s a double whammy. How wonderful your daughter knew you two days ago. There is a Pat on this site from Alberta. Her husband did not wake up and speak for six months. Then one day he did. Everyone is different, but there are people around with stories of unexpected healing beyond doctors expectations. Brain injury recovery is a twisty turns process. You are doing all the right things to help your daughter.
Judy
P.s. So pleased you are over your flu.
Did you find out why your husband would not stay conscious, did they tell you? Tonight my daughter moved her hands and feet as if stretching her whole body, she did this many many times. This made me wonder if she was beginning to wake up, she opened her eyes when doing this, needless to say I was happy to see this.
But I can’t stay happy too long, I noticed she had blood coming out of her head where they put the draining tube in and I told the nurse who called the doctor after having dabbed it with cotton several times. The doctor just looked at it and said it did not come from her brain, it gave me a scare. Then her breathing was too slow and the nurse came over and looked it over and called the breathing machine to put her back on the ventilator. I’m just wondering what caused the head to start bleeding when she doesn’t move, it started all of a sudden? Anyway I stayed there until I was certain that all would probably be okay until morning at least. Before I left the nurse told me that they had no plans to put in a new shunt yet and I answered good because I would not give my consent to put one in just yet, I think she needs a break from all these procedures for awhile, leave the head drain in, it’s working fine for now and she can perhaps get a bit of rest. The results of her blood tests showed that her infection was no longer there. They told me the other day that they could not test her for C-Difficile but I guessed they changed their mind and that also proved negative, and that is a very good thing.
Hi Diane,
Every day your daughter is alive is a good day. For my husband, he finally stayed conscious after the shunt was put it but it took weeks to figure that out, weeks with two ventriculostomies, the first of which got infected and ultimately blocked. It got infected but they could not take it out because that is what was keeping him alive. Like a dog chasing its tail. All this is to let you know that the journey after aneurysm surgery is a long and winding one, not a straight line, for many people who endure it.
Neurologically, if your daughter is now opening her eyes spontaneously, that is big. The skin of the scalp is highly vascular, which means that if you cut your head it bleeds more than you would expect from the same cut on your knee. So if the doctor is not worried, it is likely that it is just a little superficial blood vessel that is leaking.
Hang in there.
Judy
Thanks but when I saw the streaks of blood coming out of her head and not knowing what was causing it made me feel faint the nurse kept dabbing at the blood that kept coming back, I held her hand while this was going on. The nurse did get a doctor to look at it. And this morning when I called the nurse told me the neuro team did not seem to think too much about it, but I find that this neuro team are just going by all the beds, discuss things for a few minutes, in some cases a few seconds, in other cases they don’t even stop? Do they not care, I have never seen them go up to a patient and say Hi Mr or Ms so and so, how are you today…it just takes a second or two, once in awhile one of them has a smile. This is my daughter’s 3rd shunt, and 4 or 5 of those exterior head drains and each time there were complications and things did not work out with the shunts, right now I’m very worried about the next shunt but you’re right she needs it to stay alive but if they never work? What then? You are right the journey is a long and winding road and it hurts to walk it and I’m trying very hard to hang in there and at the same time keep my other life at home with my animals, my husband and my grandson going and believe it or not that is a journey in itself.
Today I think I will talk with the chaplin at the hospital, it might brighten up my day!
This is not easy for you. I was with my wife during her fifty-one day ordeal, and it was the hardest thing in my life I have ever done. I was not at my job, but I did have some responsibilities and had to keep them up from a distance. It is no surprise that it affects you strongly when you love someone. Seeing the chaplain may be a good idea. Welcome any support you can receive. Praying for you.
Yes they do care, I can promise you one thing though if they EVER let how much they care get in front of “Business” they become totally ineffective. That can happen to Moms too. Your job is to love your daughter, and THAT no one could do better or is doing better than you. OUR job is to support you and pray for you THAT is happening too. In fact prayer warriors on all of our communities are praying.
That blood thing? Only happens when the body is healing itself. Its not necessarily a bad thing. A scary thing for you for sure. No one would EVER tell you not to worry (I hope) but at the same time be confident love does cover worry. They aren’t the same thing. More prayers up for you. Progress comes in very small baby steps that grow so slowly we often miss it because it doensn’t happen the way we expect.
Hi Mrs.D,
Its been long I think, just finished work online but ofcourse Did’nt forfget to Pray for All of you. Lets just keep on moving forward and never get negative vibes it will just put your Spirits down.
I know God See everything your fear and Nicole’s battle will soon be over and in the end we will win this with Gods Mercy.
I had all this misery during my time when Annie Arrived and not give any symtoms,
so I could have prepared for but that was my test of FAITH. Everything is now a test now that your in that situation we have to believe in the handlers of your daughters life which we call Doctors we have to give our support also to them. Give them moral support too. I just read some post about things happening now and I think that its just normal.
Have Faith we are Praying
Maes
Thank you TJ,
The doctor wants to meet me this morning and talk about her breathing issues and her c02 whatever that is, she is on a ventilator and is breathing on her own for over 12 hours now, they started her on her own at 2 hours, then 4 hours and so on. This is why she came back to ICU because of the breathing problem issues. They seem to think that it’s her brain that enables her to breath? I say after a month of breathing on her own in NACU, she should have been able to continue but then the neuro team removed a shunt in her head, put in another one that went to her lungs and filled them with water because the lungs would not absorb the water, so them emptied the lungs, gave her medicine also to remove water she was swollen all over, then they removed the shunt that went from her brain to the lungs, made a hole so the wate from the brain would flow into an exterior bag for awhile, then infections settled in, more taking out fluids from her lungs…all this off the ventilator, then this is where she started with the breathing problems, well I think I myself would have breathing problems with all this going on with me just from the stress of it all. Do they think she is not feeling all this? I’m getting panic attack just thinking of all the procedures she has been through. Now the doctor wants to meet me today to discuss other breathing options??? I don’t know what I need to do to convince them that my daughter will be okay only if she could have a little time to not be poked at, just let her lie there comfortably on the ventilator and keep weaning her off the ventilator. She is also on lots of medication, some to keep her blood pressure high, some for the infection, lots of aspirin, blood thinners and god knows what else. Thank God she tested negative for the C-Difficile virus…what do you all think, Can they leave her alone for a week just to see what will happen, 2 weeks ago we were watching a movie she actually watched it with me, the nurse even noticed it, she was moving her eyes blinking and watching the screen, also moving legs and feet. She however could not squeeze my hand though. When I went home during those visits I felt wonderful, I felt she was coming back to me. Now when I leave the hospital I want to cry, and now this meet the doctor to discuss her c02 breathing probs, they caused it didn’t they. The neurosurgeon walked in yesterday I was at her bedside, he only said how are you? I asked how do you think my daughter is doing? As usual he said no change? Very encouraging to hear…he’s not a very compassionate doctor, no bedside manners at all. Does he not realize that one little word from him would make me so happy!
Met with 2 doctors, the nurse attending my daughter that day, the chaplin and me. Meeting not at all about my daughters breathing, it was more about where do I want to go from here? My daughters heart is good, she can breathe on her own for a dozen hours maybe more? she is taking antibiotics for her infection. I told the doctors to let her rest a bit before trying to insert another shunt (4th one) , problems with all the others.
The doctor mentioned they might be doing more harm than good? I’ve been telling them that since the beginning and now they are realizing this? The doctor told me she was in a persistent vegetative state and that she would stay this way forever. I asked him if he was certain of this and he said 99 percent sure? I think they are trying to tell me in a nice way that perhaps there is no hope for recovery and I have a hard time with this, I hold her hand, it is warm, she opens her eyes, she moves her feet and fingers, she makes faces, she’s alive and I’m supposed to do what, the meeting ended with my telling the doctors to keep treating Nicole with antibiotics, and keep her on the ventilator until the infections clear up then what? I guess another shunt operation, this would be the 4th one. I saw on the internet that they sometimes make the shunt go into 4th ventricle? I really do not know what the answer is, I just know my daughter does not seem to be waking up and it’s because of the water on her brain and all the complications she’s had to go through. Very discouraging and difficult to go through! Tomorrow will be her 55th birthday!
Thanks for caring!
Diane, we do care. I’m sorry that was a difficult meeting, however, now at least you’ve had a meeting where there was meaningful discussion. I’m very glad the chaplin was there. Will chaplin stay in touch, do you think?
Tomorrow is her birthday, and that’s going to be a difficult day. Please focus on the very best memories that you can. It won’t be a happy birthday, but it will, at the very least, be a day to remember of all the happiness that your sweet Nicole has brought to your life.
Wishing you strength as you go walk this difficult path.
OH Diane, what devastating news. It breaks a mother’s heart. You are doing what mothers do: making sure she your daughter is comfortable and well cared for. In the meantime, whether she wakes up or not, her lungs are strengthening and healing and her body can rest. They would not be talking about ‘down the road’ plans if they thought your daughter’s condition was unstable. Please keep us posted as things unfold.
Truly difficult! My heart goes out to you. Doctors can do their best and have good reason to give the percentages they do, but they do not have the final say. Some of them admit that. I hope you can share with your chaplain. Prayers for you from here.
I remember my husband then with you, making decision on what to be his next thing to decide on. Really a heatbreak Diane but Nicole will do her way on this with faith that she can fight for her life. I’m very sad because i can feel what you are in right now tears are flowing while doing this i don’t know why maybe if i can show all your Nuero that there’s hope on patient like us just treat it properly with knowledge given by God i’m sure things will do better.
And yes Diane, even my husband was told about the final step because I can’t do anything on my own after me being a bedridden wife, so my Doctor wanted him to choose what he think is better for him. but still he choose to be with me even though it will take a lifetime to make me recover. and with this i tell you it’s not easy really for Nicole like my experiences during recovery stage you will need a lot of patience and love as you are showing right now for her. she will do fighting on her own feet just like what you told us on your post. Mine was after the team of my doctors finally decide that i’m not going to be better that they stopped everything and pulled medications given to me by head surgeon.breathing on my own but a vegetable and on that day after my relatives,parents and friends are being told that my body will lay at the chapel near our home because Doctors want my husband to be prepared at the worst scenario and minutes after they cut all i was not breathing my husbands could not hold his tears but cry at me he thought i was dead that time but he felt that my right hand moved that made all doctors who was present were surprised. the head surgeon just said miracles happen. they all cry because of what they witnessed. i was admitted june 29 september i was discharged because i want to go home that we make a waver on this,i felt dizzy and still groggy i can say i was not really stable but i just felt that when i stay long in the hospital i might die so i decide to be with my kids rather than never seen them. actually my nuero surgoen became a friend of mine that whenever i feel discomfort about the headaches he always explain why do i still feel those. he was concerned when i decided to go home,he told me that traveling with my condition is not a good idea and because of the hours being spent on a car i might not make it. i was very thin then actually as if i was a skeleton my eyes are huge my children where scared at me then…hahaha i know i can tell how hard it was for all the caretakers,husband,sister family of Annie our hospital bill was millions to pay but it was all clear and paid thru years of working…I can attest that there is hope to all your troubles.
I Pray that my experiences in surviving Annie will be like with your daughter Nicole.she will also succeed on Annie. keep up the faith.
What an amazing story, thank you for sharing it. You are lucky to have an advocate to fight for you like your husband did, he never gave up on you that is wonderful. You fought many battles and you won the war against your horrible annie that is great. I just hope my daughter comes through just the way you did, I do not know where you come from but here in Canada we have medical insurance and we do not have to pay hospital bills that would be impossible for me to pay all the money that it must be costing to keep my daughter alive for 4 months, she went in the hospital October 23, 2017. This week they are making sure she does not have any more infections because they want to put another shunt in her brain to drain the cerebral spinal fluid, this will be shunt number 4. My big worry is what if shunt number 4 does not work, the 3 others did not, there was always a problem, infection, blocked shunt, wrong shunt for her etc. How much more can she take? Tonight I find she is awake more, she does not really obey commands yet but she does look at me intensely as if trying to tell me something, I feel that she knows me. I talk to her, hold her hands, tell her she will be okay and things like that but will she, the doctors say no, what I see is what I get. She is out of ICU and into NACU once more 7th time, and breathing on her own once again, and hopefully this will be the last operation, and the last visit to ICU, we will know soon enough. A very stressful couple of weeks are coming up for my daughter I only hope she will be strong enough to go through them without any more infections and lung and breathing problems. Thanks for caring.
Dear Diane,
I feel in my heart that Nicole appreciates every single thing that you are doing for her: every touch, every kiss, every whisper. She is a very lucky woman to have you, strong and positive you, as her mother.
More big hugs to you.
Seenie
Today my daughter went back to ICU because she had stopped breathing, from there she went onto a ventilator, her blood pressure had dropped to a very dangerously low BP and they gave her medicine for that too. NACU did not telephone at two am to tell me about the transfer and my husband was angry at them for that but I was not. I have to admit I am beyond anger at this point I can see that she is breathing too fast and her heart rate is also too fast always over the 100 beats per minute.
When I got to the hospital the young nurse suggested that perhaps it would be a good idea to cut my daughter’s beautiful blond hair and I agreed with her. It had been 4 months now and her hair had never been washed out because of all the procedures that were done to her head. Well we did it together and I’m glad we did it because it looks much better, I always wondered why I had not thought of this sooner and I thank the young nurse for telling me that that’s what she herself would want. They also sent my daughter for a CT Scan no results yet, takes about 24 hours I’m told. In the meantime while I was with my daughter the doctor came by and once again talked to me about quality of life and once again told me that my daughter’s condition would only deteriorate from hereon and I was once more filled with a terrible grief that was so intense I had to ask the doctor to please stop talking to me about it. The doctor was nice and apologized and mentioned to me that he would meet me again another time and perhaps bring the chaplin in for support for me.
After the doctor left the nurse and I continued to cut my daughter’s hair and we were both quiet at this time because I was very upset inside. My daughter had her eyes opened when we had started cutting her hair and I had not realized that she was awake all the time the doctor had talked to me and I hope to God she did not hear his words? I left that night around 8 pm and I’m still thinking about what I should do or what I should not do. The doctors are trying to tell me that there is no hope of my daughter Nicole to ever recover from her present state which is a persistent vegetative state, in and out of consciousness, breathing problems, more in and out of ICU to NACU.
I had my husband print me a picture of my daughter and I hung it on her wall in ICU for all to see what she looked like before her aneurysm, all the nurses appreciated this so they told me.
When I meet the doctor next week, once again I will have to tell them to help my daughter if anything happened and this does not include DNR (do not ressucitate) and I ask God every day to please forgive me for making this decision for I cannot let her go just yet and I ask Him for a miracle, anything to make Nicole live just a little bit longer. I wanted to ask the doctor about quality of life and what was wrong with helping a patient live on his life even if it meant a grave deficiency and what would he do if it were his own child but I didn’t. Well I guess I have written down my own answer and it is a very difficult thing to go through every time something happens. Life is filled with many curved balls you just have to bend a little here and there to hit it smack down the middle.
Thank you all for listening, can’t explain how I feel right now.
PS I read about aneurysms all the time on the internet and all the complications that go with it and people do come out of it many many times and hopefully my daughter will too.
