April 1st, 2015, Jackson Memorial Hospital

A few steps back today.  I swear Rich can't get a break.  Arrived to find his blood pressure low, 68/58, so the new fellow tried to give him a bolus of 250 ml of Sodium Chloride.  BP up to 86/70, but then down again to 60-69/52.  So that bought him Levophed, a vasopressor.  Unfortunately for him 3 of his toes on his left foot are pretty dark and one toe would not even blanch when squeezed, so he probably has thrown a clot to one of his vessels in his foot, and being on the Levophed, which is a vasoconstrictor, he will probably lose those toes, which is the least of his problems.  Because his blood pressure is not stable, they cancelled the trach and the PEG tube for today.  At 6:15 pm Dr Bloom saw me in the hallway and told me no changes for the positive.  He now has gone from saying he is "pessimistic" to "very pessimistic" and made a point of that.
I read a really good article the other day that I would like to share with you.  If you Google :  NY Times,  2011,  A Drug that Wakes the Near Dead,  don't read it for the paradoxical effect of Ambien, but for the journey these parents went through, so that you can try to understand how hard it is to make these decisions about care.  It will also give you an understanding of what a vegetative and  minimally conscious state is.  I am not naive or looking through rose colored glasses.  I realize his chances for any recovery are slim to none.  Easier to stand by the sidelines and say what you would do.  I just wish God would make the decision for us.  Oh yeah, one day on this trip Rich and I were talking about the fact that we still needed to do our trust and living wills.  I told him one of these days we would be caught...isn't it hell to be right!  If you learn anything from all of this, make sure you all have your living wills done with explicit info on what to do in circumstances like this.  Thank you all again for your prayers and hugs.  I truly feel them.