Firstly thank you to everyone that has contacted me via PM or text and thank you Geina for the lovely message and starting the other thread, and to all that replied, you are all very kind.
Well, today was the meeting. I found it very daunting as there were so many people there, The consultant, 2 of the senior ITU docs, all the critical care team, senior nurses etc etc.. All I wanted them to say was she is stable and were going to leave her alone, that sounds odd I know but in the past (cant explain details here as even Andrea does not fully know) but there have been major problems and complications when trying to extubate her when its been a prolonged period like this, so for me anything they did now carried a risk and I just wanted to keep her safe, keep her in her little bubble, but at the same time I want her back and to be ok so I’m very much torn.
They have decided against the bypass, unless there is any further deterioration at a later stage, they are going to keep up the measures of trying to get her temp down again, BUT they have NOT removed her from the critical list, that was the hardest blow as I had hoped that she would at least of been moved down a stage, they are still concerned that her temp is too high, that her heart is still not performing properly all of the time, and her SATS are still a bit lower than they would like. They were positive about the fact that they managed to remove the chest drain successfully yesterday and that the infection is reducing but were honest that there is still a long road ahead.
It might seem like not a lot was discussed, as I’ve just gone into the main bits, but it was very in-depth as they went through every crash team report (which was hard hearing what they had to do etc when I was not allowed to stay), every chart, test result, procedure, vent setting etc really in depth, most of which went over my head though! And the meeting lasted an hour and a half!
Then the talked about the dreaded….. when to extubate, I just broke down and cried again, and felt like a complete fool in front of everyone, but they were all very understanding becasuse of past problems and said that as and when they decided the time was right it would be done slowly and protocols of gradual weaning will be put in place to see how she copes with reduced support first, and all will be done under extreme control, but it was something that needed to be planned for now as they cant assess what, or if any damage to her brain/memory has been caused, or know how her lungs will perform without the ventilator until she is awake and off it, so this will be reviewed again in 3 days time.
So now I’m split down the middle, as I really don’t want to be here when they try and possibly fail, BUT I have to be the first thing she sees when she wakes up, now I just don’t know what to do.
All in all, she is still the same as Friday, nothing else really has changed.
Sorry for such a long post….
Alex
14 Replies
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Alex, you are just amazing! I can't imagine how hard it must be to have to sit through such a long and detailed meeting, talking about someone that you love so deeply, and especially as your background is not in medicine. I wish that I could express how much admiration I have for you.
It must be very difficult, knowing that it has been difficult in the past for Snowy to be extubated successfully, but it sounds as though your team have a good, sensible plan for when that time comes. You are wonderful for wanting to be the first thing that she sees when she's extubated. That's so selfless of you! I've been on both sides of that equation, and understand how important it is for Snowy to have you there, but also how horrible it is to have to watch someone be extubated!
You, Lewis and Snowy continue to be in my thoughts and prayers (and I have a little candle in a teacup here with me for Snowy that I'm watching as it flickers and flutters). Thank you for the update, and I hope and pray that things will continue to improve.
Wishes
a long way to go, yet a long way come so far alex
long meeting, i think u have minuted the whole thing
dont be too disheartened by he heart and sats, remember they have been struggling, fighting hard to keep andrea going, fighting infection and fighting hard!
the heart will get stronger, as time goes on, and her sats improve as her lungs heal..
fantastic news yesterday bout the chest drain removal being successful! brightened my day, esp with infection reducing too, even better lol
all steps pointing in the right direction towards the CRITICAL LIST REMOVAL you speak of
i know cos of past exp of extubation u are v scared, and 'on the fence' bout wot to do, but in your heart, when it comes to it, u will know what to do... what did i text you last nite - think of the way forward , not of the past. i know its hard, i can only imagine wot it was like then..ut this is now okay, and like they say they are goin to be cautious and in a very planned, controlled manner - so thats all very reassuring
fingers and everything else crossed now for the review and tests on wed xxx
here for u and lewis as always
x x x
Thank you Alex for updating us so soon after the big meeting, it was certainly a lot to take in. At least you have 3 days to decide about being there when Snow's extubated, such a hard decision for you. Thinking of you, Snowy and Lewis and hope things continue in the right direction. Take care.
Alex, you are doing brilliantly. Every day is as hard as the one before and you are still there doing all you can and helping Andrea fight. You are a total star to keep going, so don't worry if you have a few shaky moments.
As always, sending positive thoughts your way. Don't forget to look after yourself as well as Andrea and Lewis.
xx
Thanks for updating us Alex. It is positive news - more especially as they are listening to you and planning for a controlled extubation.
You know.....it is okay to cry....you are allowed...and no-one will think any the less of you. As I have said before - you have been to hell and back and are still in the throes of the fight.
Allow yourself time and space to be angry, upset or any old way you are feeling.
Here as always and thinking of you, Andrea and Lewis.
Feejay
Alex, thank you so much for the long update! Like Jo says it can't have been easy sitting through that and listening to all the crash team reports especially as it must have reminded you of all the worst times you'd rather forget - but you did get through it and it seems they listened to you and took things on board!
As Snowygirl says Andrea IS heading in the right direction and she has done so well so far, so crossed fingers that things keep improving, even if slowly, and the next set of tests takes her off 'the list'.
Thinking of you all as ever and hope you manage to get some time for yourself. Hope Lewis is doing ok as well. xxx
Thinking of you all and hope more positve news but time will tell.
lots of love and prayers to you all xxxxxxxxxxx
Alex, no surprise in the least that you cried and especially at that point. Such a daunting meeting too. Can understand wanting to leave Andrea safe in her little bubble but at the same time knowing that this cannot be for ever. Be assured that we hold you all close to our heart.
Moira x
PS Sometimes it's better not having a medical background. My husband worked in serious head injuries and sometimes I think he knows too much.
Thanks for keeping us updated Alex. Thinking of you and Snowy and Lewis as always and hoping and praying for positive news. Take care. xx
Have been checking everyday on your progress snowy. Keep fighting we are all rooting for you.
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lol 
Snowy - Saturday - 1 day in :-)
