What a beautiful and vivacious woman your daughter is. Every decision you are making is out of love. How blessed your daughter is to have a mother advocating so actively for not only her medical treatment and care but also the whole of her life.
1 Like
Nicole’s picture radiates enthusiasm, love and zest for life. We know who she got that from, and now you are channeling all of that love and enthusiasm back into her care, as you have always done.
We are here, Diane. Sometimes it’s hard to know what to say under such difficult circumstances. But I do know that I greatly admire your strength, your conviction and your ability to care so much for your darling Nicole. We are thinking of you, even when we don’t know what to say.
Wishing you strength in your difficult, challenging and love-filled journey with Nicole,
Seenie and everyone at Ben’s Friends
Thank You Judy, she loves people and she is quite the trooper fighting many battles and hopefully we will win this war against this dreaded disease that acts like a sniper out for a kill. Time to stop it dead in it’s tracks, we are trying very hard to win this even though lots of people at the hospital are telling me that we can’t win.
Diane
Thanks Seenie,
I hope I am doing the right thing for my daughter and not doing it for me, I don’t have the answer to that yet and just in case I am right I have to keep going along this treacherous road adventure alongside of Nicole. She looks beautiful with her hair shaved off. I have many pictures of Nicole in the hospital they go from October 23rd to yesterday. I don’t know if we can post them all maybe just a few of them do you guys mind?
Nicole’s son will be visiting her today, I have to drive him there because we’re about 20 km from the hospital and there is no public transportation where I live except for one bus in the morning and one at night.
Thank you all for the support, my heart lies heavy today but after reading your responses, helps me cope with things.
Thanks again
1 Like
Your Nicole is just beautiful Diane. I believe God works through people, and it sounds like the nurse is someone that you needed today. Angels show up when we need them.
Im praying for positive results on the CT scan and I pray Nicole is having beautiful dreams while she is resting.
1 Like
The first one is her son arriving at hospital, the second one as he approached closer to her face she opened her eyes for him ! Two days ago the nurse and I shaved off the rest of her hair for obvious reasons.
1 Like
Thank You Michelle!
I never thought of God working through people, that just shows you how much
I have been praying throughout my life. Lately I think about him a lot!
Thanks again Michelle!
God has it’s way,
Have seen her picture, I just can’t resist not making any respond to your post.Without tears she’s telling something to you i can’t really zoom in, but honestly she is really tired.
She’s at the stage were battle with life and death is present i hope her radio still play’s along,so she could decide to on her own too.I’m aware though could’nt do anything then, but just to listen to every one who visit’s me.And listen to my theme song playing at my little radio “ORDINARY PEOPLE” this song really hit’s me.
At this point Diane we can’t tell, niether one of you ( Dr. & You) can decide.until the time is up for her to choose.
As they say “Life is a Choice” this goes with Nicole.
I STILL PRAYING,
Maes
Thank You Maes, tomorrow she gets another shunt operation, you are right she is very tired and I can’t wait for her to get lots of rest, hopefully it will be after the operation tomorrow? We will see, I will keep you all posted. I mean she just got out of NACU and had to go back to ICU just over a week ago because she had stopped breathing. They say it’s her brain that gives her breathing problems??? So why operate on a person with breathing problems, they tell me because an exterior head drain can get infected, well an interior one can too. So this totally baffles me, 4th shunt first 3 did not work??? Doctor talked to me again today about her quality of life and that she would stay this way forever, well maybe he’s right.
1 Like
Diane, your daughter is absolutely beautiful! I pray that her shunt operation goes well and she can have a break from these surgeries. My mom also had to go back to ICU a few times during her stay at the hospital. It’s very disheartening but you’re doing everything you should be doing. You’re an amazing mother!
1 Like
Thanks Rachel! I will post some of her paintings when I get a chance.
2 Likes
Hello Diane,
How was Nicole’s surgery?
Hi everyone,
Nicole’s surgery was cancelled until tomorrow due to her breathing problems. I’m afraid a 4th shunt will also fail and do not understand why they do not find an alternative like ETV I asked the nurse to tell the neuro early this morning. The nurse later told me that the neuro said it was not appropriate but did not say why? When they call for my permission or later on today I will ask them myself. The neuro from the beginning never did think the shunt would work and yet he won’t find the solution maybe there is none I don’t know but I sure do not see this surgeon very much. I will give you an update on the operation, we need a miracle here I think. Again we are all worried to death!
@Dianelap My thoughts and prayers are with you, so please forgive me if I seem blunt, I’m wired that way but that doesn’t mean I care any less about you or your daughter.
ETV is effective in a very few instances. All of them are some variation of Non-communicating Hydrocephalus which generally indicates a blockage at a site within the ventricular system or between it and the subarachnoid space. Its almost always congenital and almost never result of injury. Basically ETV is replumbing or roto-rooter as its fixing a “mechanical problem” A shunt reroutes the flow because normal flow can’t be established. This is almost always the only option in the case of injury.
Definitely ask. Yes a 4th shunt may fail, and I can certainly understand your hesitation. What is it they say about insanity being trying the same thing over and hoping for different results?
The thing is that doesn’t apply here. This situation is more like trying to establish a running game in a football game. Sooner or later the runner will break loose and open up the whole game.
So what happens if it fails? The bottom line is NOTHING. You will be exactly where you are now.
Here’s the questions I would be asking: What if it works? What are the expectations? Why are they putting her (and this point more importantly YOU and her family) through this. What will a success mean to your daughter. Will it change anything?
Docs usually never give up. They always look for one more procedure, one more medication etc. That’s a good thing usually. But they also have a different measure of success. I used to be that way, but now I know real success is waking up and the first face I see is Jesus. How can that despite the pain for those left behind be anything BUT success?
TJ
2 Likes
Hope whatever path it would take.
Still praying.
LOVE LOTS,
Maes
2 Likes
Hi Diane,
hope you’re in good health and eating a lot too to suatain your stamina for taking care of Nicole.how is she doing now?
2 Likes
Hi Maes, Nicole had her shunt operation and so far so good, she has been breathing on her own and is now in the NACU once again. She is still breathing too fast so I hope that she will slow it down. At least now her eyes are still open, and she still looks at me and she moves her feet also. She is still on antibiotics and the nurse told me this morning that she would probably have to be on them forever, I don’t know what that means but I will find out? As for me I am in a kind of a burnout state right now, yesterday I could not visit because of it but as I write this I was on my way out to the hospital to spend a few hours, I am trying to cut down on the hours because I have her other dog now and they also have to be taken care of and they only have me to walk them etc. My little cousin’s cancer has not spread so at least that is good news, she has to undergo lots of chemo sessions and they start this week. She has been a big source of support for me regarding Nicole and even though she has cancer she still finds the time to ask for an update, a really kind person. Will keep you all updated, hopefully she will come out of this soon, according to the doctors she will be brain damaged but I think the picture is not as bad as they say, it just takes a lot of time and good hospital care. Time will tell, and yes keep those prayers coming, for both Nicole and Johanne. Thank you all for your kind words and support.
Thank you TJ, I think the doctors are trying to tell me the same thing you are but I want them to keep my daughter alive as long as they can. The shunt operation was a success as all the others were, and it’s been 4 days now and it’s still working okay, so hopefully something good will be happening soon. She opens her eyes, and moves her body around in bed as if stretching from a long sleep, her eyebrow moves now it didn’t before but still no movement of the hand if I ask her to squeeze my hand? Doctors will probably want to talk to me again about her quality of life, I really do want her to go on no matter what her condition, call me selfish if you want but I call it love. Thanks TJ I just hope she will be able to go into a wheelchair and paint with her mouth if she can’t use her hands, one never knows does one? The brain is very complicated and who knows what it can do if we give it time. Time will tell TJ thank you for caring. Are you a doctor?