Thursday, August 03, 2006

medical intransigence or God's will?

it has been a hard day. it was immediately apparent this morning that Grandma is sliding. as soon as i arrived, she said she was mad at me but she would not tell me why. she was quite clear and vehement about this.

Grandma's urine output is in the tank and she has been much more withdrawn. her glucose control is better but she is now running a mean blood pressure of roughly 55mmHg. they are backing off meds but the changes are slow. she did not cough much or curse today and instead allowed her breathing to drag against the goo in her airway. overall her breathing is more labored even with extensive bronchodilator therapy and, heartbreakingly, her sparkle gone.

we met with the doctor after a couple hours. he agreed she was much worse and suggested putting her back on the ventilator. Mom and i pressed him with regard to her problems, prognosis, and the long-term quality of life issues. after thrashing through everything, he reversed himself and said he wouldn't put her on a vent unless she specifically wanted it. we then went and laid everything out for Grandma and asked her what she wanted. she said she did not to go back on the ventilator and that she was ready to die, that she wanted to die. we told her she would have to negotiate with God on that one.

i realized at this point that the reason she was angry with me is because i had told her yesterday that she couldn't quit. it seemed the right call at the time, like it was a hard day but reasonable for day 1 off the vent. i do not regret it but - at the same time - today is obviously a different kettle of fish. i told her that it was okay to die, that she didn't have to keep trying, at least not for our sakes. after that, Grandma became much more interactive.

the doctor agreed to get her a 'little something' to take the edge off and started her on Xanax. this made her sleepy but much much less miserable. ironically, her breathing and oxygenation have also improved. that isn't to say she isn't still suffering.

she kept moaning and saying 'Oh God.' at one point she said, 'Why is it so hard to die?' i said, 'Well. They have built up a whole industry around keeping people alive.' she gave the only chuckle i heard all day. 'That's sure true,' she said. realistically, since control of her lungs, heart, blood pressure and kidneys has been co-opted through oxygen supplementation, inhalant therapies, and intravenous and oral medications, it will indeed be quite difficult for her successfully stop.

Mom said, 'It'll be okay. You don't have to be afraid.' 'I'm not afraid of dying,' she replied.

Grandma slept for a while before waking. 'Oh God,' she said. i said 'Yeah, he is one hard negotiator, isn't he?' 'He sure is...' 'Well, you keep at it. See if you guys can't come to terms.'

she woke once more to tell Roland and me, 'I'm stuck.' it took us a minute to realize she meant stuck between living and dying. i said it was probably like one of the old Bugs Bunny cartoons. not too bad but the first step is a doozy. a minister friend of all of ours, Sandra, came by to visit and pray with us. it seemed to offer some succor.

we left Grandma asleep, wrapped in our love, with many prayers to God to make up his mind with alacrity and stop her suffering one way or another. now we will just have to see what exactly He decides.

i find myself quite troubled - where exactly does the line fall between God's will and medical capacity?

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