Update Monday 26 April evening – today, we had expected her life support to be switched off and I had prepared myself for that. I spoke to the doctors and nurses last night about the process, organ donation and soforth.
However…
The doctors reduced her sedation this morning and were extremely surprised that she appeared somewhat able to open and close her eyes on command. It is very erratic but there appears to be something there. She has also come off forced ventilation and is now on CPAP, which was described to be as assisted breathing with her initiating the breathing. This is good news, of sorts, this early and means she is not end of life care at the moment.
So, they are investigating whether she has “locked in syndrome” which affects 1% of people with the type of rear brain stroke that she has. The syndrome is a spectrum of consciousness with some people having greater awareness than others. The doctors need to take some weeks to figure out what level of consciousness she has and what, if any, quality of life she would have. That determines decisions about life support.
I am going in to see her tomorrow morning to see if I can elicit a response. They think it being morning and me would be most likely to elicit something. I am then not permitted (Covid) to see her again unless she returns to end of life care.
The prognosis remains extremely bleak – 90% of people with this syndrome die within 4 months, usually of a chest infection. She may also suffer further strokes, or other complications. The chance of her regaining anything other than the ability to open and close her eyes with greater consistency is essentially zero.
Please, please do not see this as “good news” – tragically, the outcome is still most likely to be the same, but perhaps we will be able to ask her some questions before that happens.
Do keep thinking of her. I have told her the amount donated so far and I just know the idea of seeing the impact of her fundraising with her own eyes is probably a big part of what is driving her to keep going.
She is one hell of a strong fighter, that’s for sure.