Thursday, August 27, 2009


I'm going to speed this up a bit not - partly so I can catch up to real time and partly because the next week didn't bring a lot in terms of action for my Dad. From my perspective there was a big change with Dad from Saturday to my return on Monday. He was awake on Sunday, but they had to put the catheter back in and that didn't go so well. He strongly resisted the whole thing and they needed to sedate him at some point in the day. My memory of what all happened here is fuzzy. But between the sedation and just general sleepiness/loss of consciousness caused by the hydrocephalus, Dad was intubated and asleep when I next saw him. He would remain in this state for the entire next week (8/17 - 8/23).

When I got back Monday I went straight to the nursing home to see Grandma. She had numerous visitors over the weekend - pretty much the whole family had gotten there to tell her goodbye. When I got to the nursing home she was no longer talking to anyone, just resting quietly. A couple of hours later she left us. It was a peaceful goodbye and she was surrounded by her family. Only Dad was missing.

The next week was a whirlwind. Gordon's Dad came up from NJ to help us with Lily. Quinn and I stayed at my Mom's. We spent days at the hospital, but also prepared for Grandma's wake and funeral. Her wake was held Wednesday night and the funeral on Thursday.  My mother, brother and I stood there at the wake receiving everyone who came to pay the respects to Grandma.    We accepted their condolences and responded to everyone asking after Dad.  It felt sort of surreal.  

The wake and funeral became "bright spots" - the only thing that sort of made sense that week.  Saying goodbye to Grandma I could at least get my head around.  It was sad, but it made sense - it was expected - it was therefore, "okay".  I hardly had the energy to truly mourn her loss.  Instead, I sort of held on to it, went through the motions, taking comfort in something that felt vaguely familiar.  Please don't think that I'm not sad that we've lost her  - I am.   But in the scheme of horrible things that happened that week, Grandma's passing got lost, at least for me.

After the funeral Gordon, Lily and Ba Ba went back to Somerville.  I stayed behind with Quinn.  At some point that week Dad got pneumonia - mostly likely from being intubated and in the ICU.  Here's where the reality of my argument with the nurse starts to come into play.  Dad is so sick and needs to be in the ICU - yet it's a place where he is just destined to get sicker with other stuff the longer that he is there.  They put him on antibiotics to fight the pneumonia, he remained on the vent.  We went to see him day after day and stood there by the bed, wishing he'd wake up, knowing he couldn't as long as the vent was in, wondering when we'd next get to talk to him and what that would be like.  

He had vasospasm.  He was treated for them.  His hydrocephalus was monitored.  His head continued to drain.  He had two more angiograms - both were negative for aneurysm.  On Thursday a doctor sat down with us, drew us pictures, explained a bit more what was happening.  He explained that although they couldn't find an aneurysm the blood pattern in his head was what you would expect from an aneurysm.  He had a lot of blood, in a star pattern - he was in the category of "diffuse, angio-negative, sub-arachnoid hemorrhage".  (I went home and looked up papers later).  The blood had circulated around his head and there was now blood in his ventricles.  The blood products were also blocking the natural drainage system in his head causing hydrocephalus.  The pressure in his head was normal, but the ventricles were swollen, enlarged.  There was too much fluid there.  The blood and the swollen ventricles were combining to leave him sleepy, unconscious.  They were draining his head, fighting the pneumonia.  They still weren't sure what had caused the bleed to begin with.  He may very well be in the 5-7% of people for whom they never know.  

They explained the "1/3 rule" to us.  One third of the people with SAH never make to the hospital.  One third recover with some neurological deficit. One third recover completely.  Dad had escaped the fate of the first third, but it was still unclear which of the remaining two possibilities described his future.  So we waited.  On Sunday 8/23 they removed the breathing tube and he woke up.

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