helmet, shampoo, bloody mouth, transportation

I was over at the hospital from about 1:45PM to 4PM. Dad and David got there earlier, and David had to leave to catch his train back down to northern Virginia.

Mom was, by some standards, doing better. When I came in, she was moving her left arm ever so slightly-- straightening it out and moving her shoulder in a manner reminiscent of a shrug. Around 2:10PM, I noticed that the left side of Mom's face seemed to have developed some sort of rash; it was patchy and red. We had, on several occasions, asked the docs and nurses whether they had been checking Mom's scalp regularly. They claimed they had been, but from what I could see, they hadn't done a thing with the top of Mom's head. With one of the docs there, we asked that Mom's helmet be removed to allow her scalp more of a chance to breathe.

And at that point, a rather bizarre and embarrassing exchange ensued: the doc asked, "You mean it's OK to remove her helmet?" David and I, somewhat taken aback, told the doc that we had assumed that they were keeping the helmet on Mom's head because they might have needed to move her from her current bed to another one. The doctor, for his part, was mortified. "No, we left her helmet on because she came in that way, and we assumed there was a special reason why it had to stay on." It was a classic example of lack of communication, and although I hesitate to speak in terms of "fault," I think it's fair to say that both sides, our family and the medical staff, dropped the ball on this one.

Luckily, the nurses were put on the case, and by the time I left the ICU at 4PM, they were prepping Mom for a "dry shampoo."

Mom's still completely dependent on her ventilator, but they've turned the setting down pretty low to allow her to make more of her own effort at breathing. She seemed ever so slightly more conscious today-- not in a truly "interactive with her environment" sense, but more in the sense that she was aware of the tubes down her throat and was trying to cough them up.

Mom coughed a lot while I was there, and while the docs say there's not much fluid in her lungs, her mouth seems to be generating a variety of secretions. Blood is also in the mix: the nurses told David that Mom had been biting her tongue. Mom had had a plastic bite protector in her mouth for several days; it's a piece of plastic that keeps the teeth from coming together. The protector was then removed for a couple days, and I guess that's when the tongue-biting began. She's got another protector in her mouth now, and the family has been authorized to use a nearby suction tube to suck out whatever buildup we see, whenever it approaches her lips. I had to do this several times while I was with Mom.

Otherwise, I spent my time in the ICU sitting in my default position: next to Mom's left side, with her hand on top of mine, radiating maternal warmth downward into my flesh.

Dad, meanwhile, was constantly in and out of the ICU as he dealt with a New York Presbyterian Hospital social worker and with Dr. Berlin, both of whom were trying to help Dad arrange the next phase of Mom's existence: transport back to the DC-Metro area-- probably to the National Naval Medical Center-- and installation in an acute care or hospice environment. The latest information Dad has is that NNMC does have a hospice facility, but their ICU may not have room for Mom, since they're dealing with an influx of war-related casualties. I don't see this as a problem for Mom: the NNMC hospice sounds more like the logical place for her to be, not the ICU.

Dr. Berlin seems to think that Mom is, as things stand, transportable with a ventilator, and that the question of "pressure versus volume ventilation" isn't even an issue for her. The problem right now is that Physicians' Transport Service (PTS), a Virginia-based medical transportation service, isn't licensed to drive Mom to a destination in Maryland. Going from Virginia to New York to Virginia wouldn't have been a problem, but NNMC is located in Bethesda, Maryland. Dr. Berlin and the social worker, Tara, are working on finding a New York-based transport service that would have no problem taking Mom to NNMC.

I've strongly suggested to Dad that, wherever she ends up, Mom should get a room to herself. If she can't spend her final days in her own home, I'd like her to have a room that we can make as homey as possible for her. That's not as easy to do when you're sharing your room with someone else. David warned me that this would mean spending more money. I'm sure it would, but it might be worth it in this case. I want Mom as happy and comfortable as possible. Surely that's worth spending extra.


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