Please Pray For My Mother

So, I know my last post sounded promsing but in the meeting with the pulmenologists and palitive care doctors today, it did not go well.  The steroids have decreased her inflammation some but not enough.  Her breathing test this morning was poor and she had to go back on support.  They cannot leave the trach tube in any longer and a tracheoscopy is not advisable according to the doctor.  Tomorrow morning they are going to give her one final breathing test and then they will remove the tube at which point if she seems to be in too much distress and her breathing goes down they will administer drugs to sedate her and the palative care doctors do no believe she will live much beyond a few hours at that point.  Though I have told the doctors numerous times of her anxiety disorder and panic attacks which I witness at home; I don't think they fully appreciate how badly it effects her physically.  For example, if she is breathing normallly and checks her sp02 stats on our home oximeter and they come back low like 93 (normal values being between 95 and 100) she will immediatly feel short of breath and ask me to increase her oxygen flow.  I have no idea how this effects her c02 levels as we did not have a tool for that at home but apparently it is a problem.  So far they have not given her anything for the anxiety beyond ativan which didn't really help her at home either.  I think they see her as a stage iv cancer patient and everything we do to bring her off the vent is just an exercise in "prolonging her dying" as one of the palitive care doctors put it.

I want you all to know that my fight to get her off the vent is not just my unwillingness to let her go, though I don't want to have to do that either.  It's based on a lifetime of knowing her and spending near 24/7 with her these past months.  I know she feels helpless and depressed when the drugs start to effect her.  When the side effects of the experimental drug hit (fever, chills, shaking, nausea, shortness of breath, muscle pains) she starts talking about hospice and wanting to quit.  However; time after time and she has been through this at least 15 times, once she starts to feel better she is ready to go back to fight the cancer again because she wants to beat it more than anything.  I know the shortness of breath is going to frighten her, before she was sedated she was optimistic about her recovery.  And I am positive that the distress seen now is based on discomfort from having a plastic tube shoved down her throat and not being able to communicate.  The doctors answer to this is more sedation which makes it harder for her to breath on her own.  It's a cycle; and I don't feel like they know what it is like to have a panic attack and how it can affect  your physiology.  I have had panic attacks, the worst of which compeled me to drive myself to the ER during college because I was convinced I was dying of a heart attack.  I feel as though her doctors have written her off, and they are advising us to not continue to let her suffer.  The odds are she is going to come off the vent tomorrow, but what happens afterwards I just don't know.  Because I don't know how to communicate to her doctors how terrifed she is.  How sensitive she is (the woman said 'ow' to having the gel for an ultrasound put on her)  If any one has any suggestions on what I can say to them please let me know.  Thank you for reading and whatever good thoughts you can send toward northeastern kansas would be greatly appreciated.