Past the 3 week mark, small positives but no contact from any doctors or therapists, is that normal?

[Parapp]

Hi all,

thank you all for being so supportive and helpful in your responses to me.

my daughters anoxic brain injury happened 3 weeks ago yesterday and currently she is breathing room air through a Swedish nose on her tracheostomy and they are saying about her moving from intensive care onto a neuro ward when a bed becomes free. The pasr few days she has been on some oxygen but last night they said she is breathing normal air.

She still has no awareness but does open her eyes and myself and several family members have witnessed her making eye contact with us and her pupils changing. It almost looks like when a new baby looks up at someone and studies their face but the doctors and nurses say she isnt doing this with them. They say she has a lot of issues with rigidity which i dont understand if that is to do with the brain injury or everything else and they have glove things on her arms to stop them staying in one position they have said.

The last few times we have seen her she is moving her mouth a lot, mainly her lower jaw up and down but it looks like she is trying to respond to us as she does it when we speak to her but nurses say it is involuntary.

We have not spoken to anyone besides her nurse for over a week now, the last meeting told us about assessments going forward and them doing the tracheostomy but we have heard nothing since. Is this normal? The nurse says she has been having physiotherapy and being sat into a chair and also placed on a standing table but they are not there when this is done so do not know how it goes or what therapists say. At the last meeting they told us that they would be in touch early this week and would also get their support team and psychologist to make contact with us but we have heard nothing from anyone. Just wondering if this is common and just part of them waiting and assessing her and that we will probably not have communication with anyone that much now.

[cat3]

I'm guessing that (as you say) they're focused on assessment and waiting for results, but not paying attention to your needs as a family. I'd phone and remind them of their intention to keep you informed , and of your need to be in touch with how your daughter is faring.

Best wishes..x

[Orleans1011]

Hi it’s too early to tell so far, you are at the beginning stages. Tracheotomy is a protocol so this can be unchanged when they do a breathing assessment. If she passes it it can be taken out and the hole will close. Sending prayers❤️❤️

[charlie5540]

My gp will only respond if I raise an alarm gps will only ansswer if there's an emergency or the call handler regards your call as an emergency

[Exhaust]

Sorry to hear your story . My daughter was in a RTA 3.5 yrs ago and sustained a severe TBI . We were in ICU for 8 weeks then acute medical ward until a place became available in a rehabilitation unit . We were extremely fortunate with the care she received and the support we had . Sadly the circumstances are different now due to the covid restrictions ,but we as a family were able to be with her 24/7 met with drs and all the professionals daily . I really can't imagine how we'd have coped without this level of access and support . Due to the situation (RTA)we also had outside support too and always will have . Rehab was sorted for us and then once able to return home we had a great care /support package . Although I will say none of this has made it any easier to accept my daughter being left brain damaged . We had to learn a lot about how to adjust ,sadly she is not the 22 year old ,clever ,ambitious ,caring ,supportive fun loving young lady she was . Our lives have changed forever ,the ripple effect has pretty much destroyed my family . But as I frequently say life goes on ,you can't change whats happened ,take each day as it comes and deal with it . People frequently ask me "how do you cope " ..... my answer "you just do " . I don't no much about your daughters brain injury but I would say take each day at a time ... Day 1 for us was she won't survive ,then the vegetative state then no memory won't walk or talk and so on . Were a long way out of that situation but the brain damage is substantial . Happy to chat more . Hope life begins to improve for you .