Sorry for a lot of posts recently but visited my daughter who has a global anoxic injury yesterday and was taken aside by the consultant afterwards for a discussion regarding their plans going forward and i do not know how to feel and am so worried.
The consultant was positive to begin with and said that she was breathing well on her own and that she has a really strong cough which he said was better than his. He said that they want to remove her tracheostomy and made a point of saying they are not withdrawing care but just withdrawing something that they feel she no longer needs. She has only had the trach in for 1 week and has been on a mask/swedish nose with it for the past 4 days. We felt that was really positive and a good sign as they said they felt she will be able to clear her own secretions and the trach is causing more problems with the secretions than there would be without it. He said that after removing the trach which they will be attempting to do over the next few day, she will then be able to be moved directly to a neuro ward and assessment can start which is better for her.
He then went on to say that when they have removed the trach and transferred her, they will not consider her being brought back to intensive care or ventilated in the future if she gets an infection or deteriorates as they feel it would not be worth doing that as she will end up worse than she is now and may never leave intensive care. They said if she deteriorates after leaving then they will offer antibiotics for an infection and oxygen with a mask if needed but if she needs any other intensive or intrusive treatment then they will just make her comfortable and allow us to say goodbye. This is upsetting as feels like they are subtley saying they are giving up. She is only just over 3 weeks past the incident that caused the damage and she is opening her eyes and makes small eye contact with us and has started slowly moving her arms and we have seen slight movement in her head recently.
Is this something other people have been told? It is terrifying me as he told us about risks of pnuemonia and other infections and i am so scared that they will not give her a chance if she gets any of those and part of me worries that they are rushing to get the tracheostomy out and get her moved on to another ward. My husband feels that it is a positive but i am so overhwelmed with the worry of what happens if she gets ill or deteriorates slightly.
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Parapp
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oh hi there,just read some of your posts,really feel for you dear.im no expert but seems to me it seems really early to be taking away trach tube?when you get a chance read through my posts/story.i dont know,but from my experience the chances of infections are really high.it looks as if they are trying to prepare you for worst.listen to me,the one thing we have as mothers is strength and hope,never give up,start asking questions and dont stop.we are all with you 150%.if you need to chat im here will do all i can to help as will the other great people in this group.my thoughts and prayers are with youxx
Hi P, I would take it as a positive and hold with that. Do the same with eye/limb movements, breathing independently & strong cough.
Yes infections are a very high risk (with or without a trach) - our son has certainly had his fair share but he keeps battling through. Try not to dwell on the ‘what ifs’ (agreed, easier said than done) I was given this very good advice by Pairof boots early on - as he said focus on what you do know and what you can do. I know how overwhelming and all consuming everyday is so conserving your energy on positives is the best way.
We also have had the ‘conversation’ early on with consultant and agreed a DNR with him - heartbreaking but we know our son couldn’t take anymore to his heart. Regarding infections these have always been quickly identified bloods, chest X-rays, Ct scans taken and appropriate levels of oxygen given and either IV or oral antibiotics given via PEG. So please do not think the medical staff won’t do their utmost for your daughter with her best interests.
It will be a year on 2nd September since our sons cardiac arrest and subsequent hypoxia injury but he is still fighting and so are we. I wish I could say things get easier to deal with but I am not there yet - don’t know when/if that day will come but ‘hope’ can not be taken from either of us.
Very best wishes to your daughter for her recovery. Take care Nanapal x
Thank you. I am trying to change my mindset at the moment as have been having some really low and dark days recently. Think i am struggling with constantly being in panic mode about what is going to happen and i am slowly coming to realise that i have to start taking each day as it comes and stop looking to the future so much. It really is a battle at the moment between grieving for the loss of how she usually is in my life and the overwhelming relief that she is still with us and fighting and i am so scared of losing that.Think i just really struggle with understanding the doctors at the moment as there always seems to be a but whenever we speak to them and they never acknowledge the positives that we see which makes it hard as just want them to reassure us that she is making progress but they dont. I do understand though that they have to work on worst case scenarios but i do struggle as usually doctors are the people who advise you in these matters and tell you what is happening so it is hard accepting that they dont know. I will keep hope though and she is a fighter. Xx
I can look back to the early weeks with our son and recall most of what you are feeling. I struggled living in ‘the unknown’ and drs not being able to give definitive answers - it’s not something you expect but soon learn brain injury’s don’t follow a ‘rule’ book. If like me you are also unable to sleep - I was lucky if I managed three hours in those early weeks eventually having to get some sleeping tablets prescribed ( first time ever at 59). Sleep deprivation does take its toll so I hope you are managing to get some rest.
You will find your own way to get through each day it is a process - grieving for the daughter you know is one of them and perhaps the hardest part for you at the moment.
Hi. Sorry not been on for a while as things this week have been so hard and i really struggled. Things have been so confusing this week and my head is all over the place. Will write an update post now to explain what has happened this week, from reading other posts i can see it seems something that is common but is so hard xx
Parapp, you're still caught up in the waiting game and some measures can be unnerving, especially where stepping down from ICU care is concerned. Sometimes changes can appear counter intuitive, but monitoring and assessment is a vital part of prognosis which won't necessarily require intensive nursing.
After the initial assessment period you can insist on a consultation with the consultant where you can have input and make any objections to aspects of your daughter's care.
Please don't lose heart unless there are hard & fast reasons to do so. Best wishes for positive signs in the near future. Love Cat xx
Thank you Cat, i think that i am so sensitive at the moment that i am just on high alert to everything the doctor say. My husband said that it is almost like we take different things from conversations with them as he focuses on the positives but then when we talk about it afterwards he says that i only seem to hear the negatives. He described it as a glass half full versus glass half empty situation and i do know that my perspective is being altered by anxiety and depression that have crept in and that i need to get a grip on those and get myself strong again for her. I have started medication now so am hoping that will help now in the coming weeks. Waiting has never been my strong point and i am quite an impatient person so think that makes it harder but i am slowly getting better at it and am trying to stop looking too far into the future and focus on the here and now.xx
It's good that you have your husband's counterbalancing view on things. Depending on personality we can see issues very differently. I was always like you P, seeing everything in a negative light. But after surviving the bleed on my brain (after a panicked goodbye to my family before passing out) made me realise there can be life after serious illness.
I now believe anything's possible, and some of the stories here from loved ones has reinforced that. The anxiety meantime can be crippling, so it's good to know you're having help with that. The impact on mental health from the shock and worry can be tantamount to PTSD, so medication can really help us cope. I hope it'll calm your panic a little m'love....
You & your girl are in the hearts of many us here P. 💐
Hi Parapp,The conversation you recount, is almost exactly the same conversation the consultant had with me regarding my husband. I don't think it means they are giving up, they explained to me that he would be at risk of worse brain injury from resuscitation etc.
My husband is now in a rehab hospital .I won't say where to protect identities. I understand that he is still at risk of infection, aspiration etc and that they would treat those and if needed he would be moved to an acute hospital...but not intensive care..
It sounds amazing if she can have the trachy removed so early and the cough sounds a good sign, she is young and has a good family behind her....and I believe no trachy gives more options for a rehab placement.
Bless you its so hard, like living in a nightmare I know. But every day brings new hope.
Thank you. Yes my husband does say that he considers it a positive that they are considering this and the rest of the family say it is best for her to get her into assessment and rehabilitation. It feels so lonely being in this situation and hearing from others who have been there is so comforting and does help to build my strength back up so i am grateful for everyones replies and support although i am so sorry that we all have to go experience this as it is such a heartbreaking and frightening thing to go through.xx
Thank you so much. I do feel so alone at times even though i have my husband and family, it just feels like nobody understands or hurts like i am but i am realising that everyone shows it differently and reacts differently. I think as i mentioned above that i have let anxiety and depression get a grip on me at the moment and am hoping that now with medication i can get a hold on it and start building myself back up.This site and the replies from everyone is so helpful and makes me feel less alone and i am so grateful for you all replying to me and offering such kind words, encouragement and support. Xx
Hi Parapp,
Best of luck to your daughter with having the tracheostomy removed. If you can, try to see it as a positive step. The doctors have you give you all possibilities- good and bad - but it is still early days and there are no certain answers yet, only what ifs. What is positive is that your daughter has youth on her side and that counts for a lot in terms of her body being able to mend itself and fight infection - her cough is even better than the doctor’s! That must be pretty strong with everything considered. My daughter had facial palsy after TBI and I had to tape her eyelid closed every night to prevent infection and helped her with facial exercises to try to restart the nerve damage - a slow process but because she was young and had plenty of collagen in her skin she eventually had a good result.
Sending love and positive thoughts to you and your daughter xo
Seems they have no concerns with her chest, lung capacity which is very good. Medical staff do give the worst scenario sadly a conversation that doesn't go. She is literally not reliant on appliances for breathing, this is good news. And chest infections are incredible high after being on machine and antibiotics they use with a bit of physio does work, especially with no current concerns on area.
The conversation is daunting, dont let that cloud what is happening and progress she is making. Easier said than done though, especially when tearful. Stay strong x
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My husband had a cardiac arrest 5 weeks ago and he has hypoxia brain damage 
Concerned about nursing home care
Just a quick update x
I am new here and have a 37 year old son who is in hospital recovering from hypoxia 
Stroke that caused brain hemorrhage, 22 days & still not fully conscious. 
