Yes! this is a good news for me today Diane, just go on with her step by step on the way to recover. she will do the fighting on her own now, I know she can do it like me .
Every one of us that had open surgery specially on our brain will cause us some damages ofcourse! this makes me smile though. but we just need some Physical teraphy to get back to our feet again and in this stage she really need all support coming from you all. So please don’t strain your self thinking with a lot of things, but just now you relax a little try to calm down okay.
There is a lot more to do after this the hospital personel know what’s good for nicole and she will fight on her battle and makes her stronger after.
As my dad told me" What does’nt kill you,makes to wiser and stronger than before"
I prayer makes miracle come true…
Still praying for the best in Nicole. For you a mother which enable her strenght in nurturing her child again in this trying time, I admire you Diane.
Diane, TJ is not a doctor, but he does have a broad knowledge of things medical, and what he doesn’t know he can find out. He is also Dad to nine children, so if anyone understands parental love, he certainly does! TJ is passionate about his work at Ben’s Friends, keeping the virtual “cyber-home fires” burning for individuals and families who are coping with rare and difficult conditions. TJ is an all-round remarkable person, and we are lucky to have him. He also had an “oopsy” in his workshop the other day, and isn’t typing very well right now. But he’ll be back soon.
Hang in there, Diane
Seenie
Thank You Seenie…
They sat her in a chair today. Of course I cried she gave me a look like she too wanted to cry! I then gave her a great big hug and you cannot imagine the joy that I felt at that moment!
WoW!..now i can’t say a word but “Praise God” in this stage on nicole’s recovery…i really felt glad by the update you gave us. keep it up Diane i’m still praying for her to be with you this coming summer.
LOVE LOT’S
Maes
Well Nicole is back in ICU again, her breathing was not good and she needed a ventilator to help her. They don’t have ventilators in NACU so she has to be transported back and forth between the two units. She opened her eyes once in ICU once again and they were really wide open and moving but not sure if she knows who she is looking at but she is def. looking.
Does anybody know of anyone that went through this breathing problem after a bleed? I would like to know if she will ever be able to breathe for herself or will it always be this way. They took an x-ray of her lungs, they took some blood, they took another scan, and I haven’t heard any of the results yet but this was all done yesterday? The young doctor attending that day told me she had already seen Nicole and told me that it was probably her brain doing this and that it would not heal??? Not what I want to hear and in return I do not tell them what they want to hear and that is to stop reviving her? I can’t do that not just yet anyway, not when she’s looking at me like that. If she were sleeping all the time and never having any body movements then I might think about it but not like this. The doctors are probably right and it probably will get worse but I have to let Nicole decide what her own faith is not me I cannot do that to my baby.
Can’t understand why doctors can’t make her breathe on her own in this day and age, if it’s her brain doing this why can’t they just find the spot that does this in her brain and fix it? I sure hope that someday we’ll be able to reprogram human brain because we sure need it. All this to say I love my daughter too much, it hurts it hurts and I will never give up, call me selfish or anything you like, it’s not easy going to the hospital every day and seeing her like this, and looking at her 2 dogs that I’m now caring for, they miss her too. I take videos of the dogs and bring them to her to see, she looks and blinks her eyes when she sees them I think it makes her happy but she cannot smile either, she cannot do many things. Thank you all for your support, you are the few that I can talk to.
Very difficult time! There is much doctors do not know–one of them told me exactly that. There is much they don’t know how to do. But they can be amazing in what they do know and do. I understand you don’t want to let go, and I think that’s ok. The final questions of life and death are not determined on earth, but they are eventually decided. Bless you!
I really can’t imagine how this is for you, Diane, except to say that I know that it’s a terrible nightmare of a journey for you and your whole family. You used the term “nightmare” in your subject line long ago, and so it continues to be. For you, it is a journey fraught with doubts and tears and prayers and questions and decisions for which there are no right answers. You can only follow your heart, and that is exactly what you are doing, with the infinite love and patience that only a mother can give.
We are here with you, Diane and you know that we are keeping you in our thoughts.
Thank you all for your support, you are the few that I can talk to.
That’s what friends, and especially Ben’s Friends, are for, Diane.
Actually, we all had this problem ‘breathing on our own without ventilators’ but it needs to be practise like my dad and husband use to do for me. (according to the nurses because they can’t perform that on every patient but it need to be carefully done,i think you know why…until the time i was able to breath again).
Yes, I guess it’s natural for them to examine her again, to tell you the truth Diane every time the doctors does this, it exhaust the hell out of me. it irritates me that i want to kick this Dr. who is doing the random examination on me.but that’s their job.
I can only share same delimma that we had encountered then, because of the ANNIE we are more closer than before. We have fought it together and i was very delicate as if i was an infant my mother used to tell me during recovery of my Aneurysm. There were many nights that my life was in danger, but they all have same faith in me that i will survive this journey on my Annie.
As for the Dr’s, though they had all the knowledge and expertise on their choosen field’s and at the end of the day they too are like us “ordinary people”. they still needs your opinion on what’s your decision on her behalf. Some say a mother’s instinct is alway’s right. So maybe that is their case, I think.MIRACLES ARE FOR THOSE WHO BELIEVE. I have faith she will survive.
Thank You Mars. Your kind words are always appreciated. You are a very kind and caring soul. I have décided to start massaging her back I think it will do her lungs and body some good. Thanx again you inspire me.
I know when my mom was in ICU with the ventilator and eventually trache we had another woman who was in the same boat, but she had a hard time getting off of the ventilator. She was actually sent to a rehab facility which specialized in helping patients who had a difficult time getting weaned off of the trache/ventilator. I would ask about that or look into it for yourself then bring it up to the doctors.
Hi thank you for your the information. Currently she is on the ventilator but low setting somehow, they want to see if she can breathe on her own. If it’s like the other half dozen times she will breathe on her own but then all of a sudden she stops breathing on her own and needs the ventilator and back to ICU she goes. She was off the ventilator for a whole month 30 days, don’t know why she can’t go back to that state permanently? Now they are talking about transferring her to another hospital’s ICU, this ICU is in my city, right now she is across the river in another province, we live in Canada. They say there’s nothing else they can do and it policy to return the patient to their province where they live. The province where we live does not have a NACU only an ICU and I would be able to see her a few times a day for 45 minutes at a time with a few hours in between, I’m afraid that is not good enough for me I need access to my daughter 24/7 if I want to. I will see if there is a rehab facility which specializes in helping patients getting weaned off ventilators. Thank you very much for your suggestion it’s very helpful.
Also about the transfer for my daughter, the nurses and doctors in the other ICU do not know Nicole, I would have to tell them that she needs a lot of suctioning, and to really watch her breathing problem, I’m afraid they will not be as competent as the other hospital and at the same time they may be more competent than the other hospital. What to do, sure hope I can find a resource to help her wean off the ventilator?
Diane, I can well imagine your apprehension. You can be sure, though, that the receiving hospital will get very complete medical records, detailing what has been done and what needs to be done for Nicole. I don’t think you need to worry about that. As far as being able to visit her as much as you need to goes, I’m sure that you will be able to discuss and negotiate that with the staff at the receiving hospital.
Nicole has been fortunate indeed to have been allowed to go to The Ottawa Hospital: the expertise there is world class, and it was within reach of your home. The alternative, Montreal, would have been excellent as well as far as care goes, but what a terrible thing it would have been to have her so far away from home. Thank goodness you’ve been able to have her near you all this time.
When are they thinking the transfer might take place?
The transfer has been done, My Nicole is back in our beautiful province of Quebec. I was waiting for her in the Hull Hospital visitor waiting room when she got there. It took about 45 min. to get called in to see her. She was in a room with real walls not curtains and a glass sliding doors. The equipment was the same as the other ICU, the bed looked new, the bed clothing was very clean looking, the table had all her medicines and syringes on a clean white diaper like cloth. Everything looked very clean and germ free. I had to wear a gown and gloves before going in and my purse, coat etc had to be left outside of the room. This I was told was to be for a period of 5 days just in case she was carrying something over from the other hospital. Anyway this impressed me a lot. I asked where her room would be after the isolation period ended and the nurse told me same room only no isolation and this delighted me because she also had a window and a big shiny clock right in from of her bed where she could see the time.
As for Nicole, she is getting the same care, she was on the ventilator at a lower setting, they are trying different things to get her weaned off, they also put her in a big big cushiony type chair and not a wheel chair. I only saw the chair had to leave because my time was up which they were very lenient with, I was supposed to stay 45 minutes and stayed about an hour and a half in the afternoon and an hour in the morning. This hospital does not have a 24/7 visiting allowed policy, it’s 45 min at a time starting at 10:15 to 19:30 at night and that’s it. At first I was not happy with this but the nurse said they were very lenient with this policy, but only 2 at a time this rule they are strict with.
Nicole had a good night and a very good day, and now I’m going to telephone to see how her evening went and hopefully she will continue to have good days? Today’s progress: Nicole seem to be moving around more, making more faces, and for the first time, she turned her head counter clock wise and looked at her son right in the eyes when he was talking to me about the electrical plug he was having problems with in his mom’s kitchen??? Could she have understood? I also forgot to tell the nurse about this but will tell her tomorrow.
This morning my grandson and I both had visits with our family doctor who is right across the street from the hospital by the way! I told him Nicole had transferred hospitals and he says he will go and see her, he also told me that the Civic kept in touch with her progress and he began to sound like the doctors at the Civic. After our appt we both crossed the street and went to see Nicole for about an hour, her heart was beating at 82-84 but no more, her BP was close to normal, she was on the ventilator at low setting though and they said they would take her off for an hour at a time to start. The nurse came in and told me to watch her as she did her assessment which I did, I usually get shooed out of the room when this occurs at the Civic so I was glad to watch, nurse concurred that Nicole did hear her. So all in all insofar as the first day goes for Nicole I think it was a great success. As for the rest of the hospital well I was not impressed as much, it may sound like I’m complaining but to me a hospital should be spic and span sparkly. Will give an update when I talk to the doctor as soon as next week.
Good Day Diane, hope there are more improvement from nicole coming now. as from your update on transffering her and giving in lost of info with her were bout’s look’s like we are slowly showing the “big changes in her too” i’m very happy for nicole.Though can’t see her now,but for sure from now on wards she will get through it with a high five! you’ll see, how she will keep on improving.I hope her radio was with her too. THANK YOU AND I’M VERY GREATFUL OF YOU FOR DOING THIS TO NICOLE.
still praying for her fast recovery.
LOVE LOTS
Maes
Yes I’m glad too that it’s going well so far. Today she was a bit sleepier but I was so tired that I didn’t talk as much as I usually do so I let her sleep she needs that too. The nurses are nice there too but the visits are shorter but it’s far more easier on me I don’t feel as tired. For example today I went for the 14:15 to 15:00 visit but got there late 14:30 stayed until 15:30 no problem with the nurse, then I went to the visitors lounge and waited until 17:00 and went in until 18:00, then I went home and for once I was home before 19:00 with supper for my husband who has influenza. Nicole’s heart rate was a bit higher today but that was because she was breathing on her own the nurse said from her experience. When you go in and visit there’s no chair hope when the isolation period is over I can get one because I’m not good at standing on my feet for an hour without moving. The nurse told me that the doctor wanted to see me and the family on Sunday and I’m afraid it’s only me because my husband is sick and my grandson does not want to go he just told me to tell the doctor to keep on taking care of his mother. So once again as if I haven’t been through this before, the only thing that worries me is that the doctor will tell me there is nothing else they can do for her I hope that is not the case.
It takes me about 10 minutes less but I have to find a parking on the street which is not always available and close by but so far I’ve been okay with it. There’s always someone leaving their parking spot. So I’ll save a bit on the gas and the parking pass for the month which comes to about $150.
Thanks Maes and yes her radio was on when I got there today and I did not even have to ask them. The nurse says she likes music I guess the notes from the Civic told her that because I had not. She was breathing a bit fast today but at least she was breathing on her own, so we’ll see what the future brings for Nicole, we will certainly keep on praying Maes no matter what. Thank you very much.