Hi all, sorry i have not been on here or replied to people in my previous post but i really do appreciate all of your comments and advice. It is so helpful and comforting and helps me feel less alone.
Yesterday we had a best interests meeting with all the professionals involved in our daughters care and it was devastating and so difficult. She has been moved onto a neuro ward now and is breathing on her own but needs oxygen at times.
They showed us the scans from her ct and explained the severity of the damage, it is global and there is no part of the brain unaffected. She has started having sleep apnea where her o2 levels are dropping dangerously low and her heart rate keeps going high. She also has moments of her eyes bobbing and dipping and rolling into the back of her head. They said all of this points to the brain stem being damaged and struggling to maintain her eye function and breathing. They said this is something that could continue to get worse but they dont know. They told us that she can not hold her head up due to the brian injury which shocked us as we presumed it was due to muscle strength from being in bed so long but they have said she is unlikely to ever be able to hold her head up or control her head due to the damage to the brain, this they said is adding to the sleep apnea and breathing problems. They also said she is swallowing less and it is inconsistent and she will never be able to eat or drink.
We are still determined to fight for her but they say there is no chance at all for recovery and that the best we could ever expect would be minimally conscious. We have asked them to proceed with fitting a peg for her but they have said they want to wait as she is handling the nasal feeding well at the moment and so they want to wait a couple of weeks before having another discussion about it. It feels like they want us to give up but they have not pushed us or encouraged us to make a decision, although they did ask us if we would agree to no antibiotics or chest physio if she gets an infection but we said at the moment we want them to continue treating her if this happens and we have only just been able to accept the do not resuscitate and reventilate but we would still want them to give her a chance to fight things herself with the help of antibiotics.
It is all so confusing and difficult and being asked to think what she would want is so tough as no 20 year old ever talks about things like this and she certainly never spoke of it to us so we dont know how she would feel. I worry that she would be unhappy the way she is or with disability but i cant give up on her and it has to be her choice and hoping that she can show us by either continuing to fight or by naturally slipping away but i am so torn about what the right thing to do is. She makes eye contact but there is no other response and all assessments have shown no awareness.
I am trying to keep hope and pray for a miracle but after speaking to doctors it is so much harder to keep that but my strength comes back when i visit her and look into her beautiful eyes and know that i have to do all i can to give her a chance. My sister describes it as everytime we hace a meeting the doctors come along and pop all our balloons and thats definately how it feels at the moment. Sorry for all the info but wanted to update people. Sorry if i don't reply to everyones comments but i really struggle to find the words and to be able to go online.x
UPDATE ON MY DADS SERVER BRAIN INJURY 5 WEEKS ON NOW!
Accepting & Acknowledging Mistakes
Post Concussion Syndrome?
They don’t want to put her on a trach!
Asking about peoples experiences post surgery
