Jump to content

Diane - new member for my Daughter


Recommended Posts

I am writing for my daughter who is currently awaiting to have another shunt inserted into her brain because the first one did not work? 


In the meantime they put in an external head drain that the nurses monitor all the time. 


After a coiling and vasospasm she had another bleed and this time the neurosurgeon went in and did a clipping of her aneurysm. 


Since the clipping she seems to be in a coma but opens her eyes and moves her feet, the nurse says she is waiting for her to squeeze her hand. 


Her heart is beating really 100+ and her breathing is faster than regular but she had a tube inserted into her throat after the initial tube was removed from her mouth. 


This all started on October 23, 2017 and she seems to be getting one thing after the other, head drain infection, eye infection, blood problem, she was swollen quite a bit but that has gone down. 


They removed the feeding tube from her nose to put one directly into her stomach.  I'm just wondering if anybody has ever had all these complications and survived. 


The doctors in ICU sent her to NACU 5 times in the past because she was off the ventilator and breathing on her own and she came back because she stopped breathing on her own.  She is back in NACU for the 6th time. 


One of the doctors told me to perhaps start thinking about letting her go and I'm afraid I cannot do this to her and I tell them so. 


I understand that she might have issues later on but surely it's better than dying.  Does anybody care to comment on this?  

Link to comment
Share on other sites

Hi welcome to BTG, glad you have found us, hope the site can be of some support to you at what must be a terrible time. 


I can’t comment on whether you should let your daughter  go. That is something only you and your family can decide on. I am sure the medics dealing with her will guide you on what to expect and the best way forward. 


However you do need to think about what your daughter would want and you probably know her best.


I hope this site can help you at this very traumatic time. Feel free to come and vent your worries and fears.

There are some here who have lost family members to SAH, perhaps they will share their stories. 


Hope you can keep strong xx

Link to comment
Share on other sites

Hi Diane,


I was very ill after coiling and I can only tell you what happened to me.


I had an SAH4  and got Ventriculitis  which cleared after a time, then a UTI  followed by Sepsis, after that cleared up I was left with Hydrocephalus.


The OT's told my Daughter to grieve for the person I once was and to put me in a home.   They bought me home and until my permanent shunt was put in I remember nothing.  Shunt was put in and I am fine, although walking is a problem 200 yards and back goes.


Wishing you and Daughter all the best xxxx Good Luck xxxx  


Winb143  xxxx 


Link to comment
Share on other sites

Hi Diane


I feel for you, my Lin went through a lot of what you are describing.  All I can do is offer what I did and that's hold her hand and squeeze now and then and let her know you are there. The peg is a better way of maintaining the body's need for food and energy, only time will tell the outcome, but you by her side  she will feel loved and wanted. I never gave up,  talk to her because sound is the last thing to go. I know my Lin responded to my voice and as long as it took I know I would always be there for her.


Never give up hope as bad as it seems, only your daughters body can decide on what's going to happen.  My Lin came back to me so never give up sweetheart. I pray your daughter will prove the doctors wrong. 


You can always send me a private message by clicking on my name. Wishing you and your daughter all the best and I hope your daughter can prove the doctors wrong.


Hugs and cuddles xxPaul

Link to comment
Share on other sites

Hi Diane,


Welcome to BTG.  A brain injury is very serious, we all know that and have been through it to some degree or another.  The biggest healer is time and everyone's journey is different, ranging from days to months to years. The key to all of this, I suspect, will be brain activity and whether your daughter will regain some quality of life.  I would say at the moment it is too early to tell, but I am not a doctor so I cannot tell you. Some people have come back from the brink, as Paul says above, and it is your daughters body that will determine the future.


I was on the brink and I came back. 'Letting her go' is a last resort after everything else has been tried. I would think you will know when that is, if the time comes.  Doctors aren't always right but they know the medical implications better than anyone.


Write down all the questions you want answering and ask the doctors for their opinions.  Only when you have done this and satisfied yourselves that all that can be done has been done can you make any kinds of decision. 


This is not a time for haste, but for careful consideration in the best interests of your daughter, taking all the necessary information and understanding into account.  You should give her every chance before taking such a momentous decision that will alter your lives forever.


You are only just over two months out from this event and it seems to be very early to be considering the worst, when some of the things you describe, such as an eye infection, seem peripheral to the main problem. 


Take your time, talk with the doctors and your family, but please don't rush into a decision you may regret for a long, long time.  It has to be the right decision in all your minds, doctors and family.


I wish you and your daughter well and hope she shows signs of improvement very soon



Link to comment
Share on other sites

Morning Diane


I think Win may have been talking about either a catheter ie water works or the drain from the EVD, but if she is talking about EVD the staff will be keeping a very close eye on it. I hope your daughter is holding her own, good luck.

Link to comment
Share on other sites

Sorry Diane,


I meant what Super said water works as bag fills up and if not emptied you get back flow of your own wee !! 


Sorry that's it bluntly xx 


Keep fighting for Daughter and keep strong xxx  My EVD's caused the Ventriculitis as I was moved too soon from ICU to a normal ward.  Then my Surgeon asked what was I doing in a general ward and sent me back.




Win xxxx 

Link to comment
Share on other sites

Hi Diane, warm welcome glad that you found us.


so sorry to hear all that your daughters going through, I know what Win means there was a kink in my cathitar tube and it was going back inside me so know that one.


everyone else has put in good input, I have a shunt and a tube in my brain, its a very long road but NO never give up hope.


take care of 'yourself' 

Link to comment
Share on other sites


This topic is now archived and is closed to further replies.

  • Create New...