11:00 - I got the DNR order revoked last night. I spent a long time talking to the nurse, and I think I convinced her that, compared to me, Mr. Spock was overly emotional. I am concerned that we'll lose mom by accident. For example, if she goes into cardiac arrest, as things stood they could do absolutely nothing to revive her. I (and mom) would want them to hit her with the paddles, assuming that merely re-starting her heart would give her a reasonable chance of full recovery.

The staff, of course, is concerned that they'd be required to revive her when doing so was pointless. As the nurse said, if she went into cardiac arrest and was down for 40 minutes, they might still be able to get her heart going again. I told her that that was pointless, and that mom and I knew it was pointless. After 40 minutes without oxygen to her brain, mom would be brain-dead. It wouldn't be mom any more, just the house where she used to live. But, on the other hand, if she goes down and they hit her with the paddles and get her heartbeat back in a minute or two, it might well be sufficient to get her past a temporary problem.

From my point of view, the DNR has no advantage whatsoever. It is horribly dangerous to have it in effect, and should it become necessary, because I hold mom's power of attorney, I can re-institute it easily. And I think I convinced the nurse that I would certainly do so if it came to that. I don't want mom kept alive by machines with no hope of recovery any more than she does, or any more than the ICU staff does.

The nurse called over the resident on duty, and he said he didn't think there'd be any problem revoking the DNR. He had to call the attending physician to get permission. As he did that, the nurse was already peeling off the big yellow and red DNR sticker from mom's chart. It occurred to me as I walked through the parking deck on my way out that the staff had been trying to make things easier for me. With the DNR in effect, I wouldn't have to make the decision if worse comes to worst. I suppose for many people that would make things easier, having the decision taken out of their hands. But for me, not having the decision in my hands makes me feel helpless rather than relieved. I absolutely hated the feeling that I could lose mom by accident. If it comes to that, I will have absolutely no problem telling the ICU staff, "Let her go." Because it won't really be a matter of letting mom go. She'll already be gone, or at least so far on the way that it would be senseless cruelty to make her suffer more.

My brother is doing the 9:00 a.m. to 10:00 a.m. visit. Mom was awake and alert when I left her last night, although she couldn't talk because of the tube down her throat, so I'm hoping she'll be even better today. Either Bill or I will do the 2:00 p.m. to 3:00 p.m. visit, and Barbara plans to do the 5:00 p.m. to 6:00 p.m. visit. We'll decide later who does the 8:15 p.m. to 9:30 p.m. visit.

9:33 - My brother is on his way down to visit my mom, and will then head back to Raleigh. Having him here made things easier for me. He did many of the visits, which allowed me to rest a bit. I don't know what it is about visiting the hospital, but even a short visit is physically and mentally draining.

Mom was holding her own yesterday, and perhaps doing a bit better. Unfortunately, that's not good enough. They still have the tube down her throat, and that can't go on much longer. They have her on ventilator, but it's not doing all the work. Instead, it's providing a kind of "power assist" that helps her breathe. Since she crashed on Monday, they've had the ventilator set on 15, which is a relatively low assist. But they've wanted to reduce that gradually to wean her off the ventilator, and every time they back it down she can't tolerate the change. Until yesterday evening, that is. My brother did the 8:15 to 9:30 p.m. visit, and said they'd backed her down from 15 to 12 and she was tolerating it. That was very good news. I'm hoping they'll be able to back it down further today.

They're being very cautious this time, because when they first removed the tube on Monday, she crashed. They don't want that to happen again, obviously, but on the other hand they really, really want that tube out. Apparently, it can literally wear a hole in the back of her throat. I know it sounds stupid, but when I'm visiting mom, I always give her tips about what she should be concentrating on. "Try to breathe on your own.", "Try to get your blood pressure up.", "Try to produce more urine output.", and so on. I understand that most of these things aren't under conscious control, in theory at least, but I figure it can't hurt for mom to know what she needs to be doing.

This is all very frustrating. I am a man, which means that nature has assigned me two primary roles: (1) defend my family, and (2) fix things. In the first case, there's no enemy I can fight with the weapons I have available. In the second, I don't know how to fix what's broken. That makes me pretty useless. Oh, I can be there at mom's side and offer her what support I can, but that's the female response. As a guy, I have two million years of evolution screaming at me, "Fix this problem. Make it go away." And I can't do that.

16:47 - The hospital called at 01:48 this morning and said we'd better get down there. We threw on some clothes and arrived at the ICU about 02:15. They said that mom had spiked a fever of 102+ at about midnight and was having breathing difficulties. They wanted to insert a Swann catheter and do some other stuff, but didn't want to proceed without permission. As the nurse said, they weren't sure how aggressive we wanted to be.

At that point, we had no idea if mom had any chance at all, so I asked the doctor some questions before deciding what to do. He said that the intervention was reasonable, and I asked him if it were his mom what he would do. He said, "I'd do it. No question." so Barbara and I both told him to go for it.

We then went out to the corridor to sit and wait. The ICU waiting room is closed from 10:00 p.m. until 7:00 a.m. I found that incredible, but at least they had some chairs out in the corridor. The smoking area is also closed from 10:00 until 7:00, but unlike the ICU waiting room, which is actually locked up, the smoking area is unlocked and in fact was in use throughout the night. The nurse came out about 04:00 to say that they were still working and it might be quite some time before we could see mom. We sat and waited some more. I eventually stretched out on the floor. It was quite chilly because of the air conditioning, so I eventually walked back down to the truck and brought up a quilt for Barbara. About 06:00, the nurse came out again and told us that it still might be quite some time before we could see mom. She said she was going off-shift in an hour but would tell her replacement that we were still waiting.

At 07:00, they finally opened the waiting room. Barbara and I went in, stretched out on sofas, and tried to get a bit of rest. At 08:30 a security guard came in and told me "No lying down after 8:00 a.m." Once again, I found it incredible that the hospital would harass people who had a family member in the ICU. A woman who observed the incident told us that the ICU waiting room had been open 24 hours until a couple of weeks ago. Apparently, homeless people were taking advantage of that, so the hospital closed the ICU waiting room at night. Duh.

It seems to me that a better solution would be to throw the homeless people out and leave the rest of us alone to do the best we can. How much trouble would it be to issue temporary ID tags to those of us who have business there? Many of the family members there are at the very edge of their endurance, and the hospital shouldn't be doing anything to make their lives more difficult.

One nice thing is that Baptist Hospital has reasonable parking rates. All day costs $4, and you can get a weekly pass for only $8. A year ago, when my mom was in Forsyth Hospital, I remember thinking how outrageously expensive their visitor parking was. For many visitors, of course, that's the least of their worries, but for some people the parking rates at Forsyth Hospital impose a significant economic hardship. At least Baptist got that right.

At any rate, we're still just holding on as best we can. We decided not to try to go back to visit again today. We're completely exhausted and may need our strength later. I called the ICU and spoke to the nurse. She said mom was stable, but of course still critical, and said that she didn't think there was any point to us coming down today. Mom is pretty out of it, and the nurse said they'd call us if we needed to be there. So we'll take the rest of today off unless we hear from them.

According to the doctor, mom still has a chance, although obviously not a good one. We're hoping for the best, but prepared for the worst.