I am still raw from wed 23 march, when I found my mum collapsed . This is her 2nd
bleed from her AVM. The first one was in 2001, from which she made a full recovery. She has always rejected surgery. Last time, she was abroad and the doctors there,
sedated her for 10 days and gave her mannitol, anti- epileptics etc via IV.
This time, mum was sedated for just 18 hours and they expect her to respond.She is 66 and I think they've given up hope. But mum's a fighter and she's moving her right side
and can feel her left leg being tickled.She can breathe on her own but they say she cannot swallow her saliva and that this is a bad sign. Her saliva is very sticky ( I get this most mornings, and I am unable to swallow this ) and I think that is why she
forces it out her mouth. She has a sucking tube in her mouth.
The other 'bad' sign is that she cannot open her eyes, but it happened just 3 days ago.
My question is - if mum can breathe on her own;she can move her mouth,tongue,and head;
is it feasible that she has a cough reflex?
Is it usual for patients with massive ( same size as the 2001 one ) to be sedated for just 18 hours?
By trying to prove to the nurses and medical staff ( so that they don't withdraw treatment, which I think they'll want to do after the weekend ), that mum is still with us - we try for hours to get her do lift her arm, legs etc - are we doing more harm? Shouldn't she be resting? We do this because the doctors expect her to respond. otherwise they'll mwithdraw treatment.
Isn't it cruel for medical staff not to sedate mum - she is aware of the position she is in. She has tears in her eyes.
Can anyone give me some advice, please ?
Dear ami-ka.. You have the right to have a family meeting with the doctors and tell them how you feel about her not being on sedates. You also have the right to ask for a second opinion before they make other decisions. Stay strong, ami-ka. Your Mum will be in my prayers.
Hi Ami-ka. I am sorry that you and your Mother are going thru this ordeal. Perhaps the doctors are afraid if they force an induced sleep it will make matters worse. For your own peace of mind…you may have to force these doctors to give you some more info.
Dear ami-ka, There were a number of days after my stroke from my av m that I had a hard time with saliva and they had to use suction. So this is not unusual. I recovered my ability to swollow after about a week.
I am not a doctor but I feel you termed “tickled” can be an abnormal reflex. As far as I know if we do not use our muscles for long time it will slowly disappear and weaken the body. May be that’s why doctors are not giving more sedation. In my opinion you should better consult a trained physiotherapist along with other medication.
On wed, mum's saline drip was stopped.Yesterday, they stopped her insulin,antibiotics,
antifungal cream, antacids. They put her on a 'Care Pathyway' - read about it online,
means they are waiting for her to die. She's only 66.
Unknown to us, this pathway allows them to sedate patints if they become too agitated-
this is what we want! We want her to wake up!
Would you believe that doctors are allowed do this to another human being? I wouldn't have, before our experience.
What will be, will be - it's in the hands of the big man upstairs.
I am only now able to update what happened to my mum.
She sadly passed away on 30/03/12. She was put on the Liverpool Care Pathway
on 29/03/12- without our knowledge. It was a nurse that let it slip.
I've spent the last months, banging on doors, searching for answers. No joy
Good old nhs.
I'm so sorry, ami-ka. I'm sure you miss her terribly. I wish you peace and healing.
I'm so sorry for your loss ami-ka. I wish you peace and healing.
Thanks for thinking about me, I'll get 'there'.
It can only be described as traumatic but I think I'm
starting to heal.It's the images of seeing someone so strong
lying in front of you, helpless, that knock me for six.
I wonder if she was aware of what was going on.
Hope to meet her on the other side.
Hi Ami-ka. Please accept my condolences. I have no doubts you will meet her on the other side. You may wish to post something here about your Mother…http://www.avmsurvivors.org/forum/topics/the-avm-survivors-network-memorial-forum
The body is mortal, but the person dwelling in the body is immortal and immeasurable.
she will be always with you.
Thanks, I believe in reincarnation to - that's what keeps me from
losing it. If I didn't believe that there is a God/heaven etc, I
wouldn't be as strong.