Monday, 28 July 2003
12:30 - Things have been a bit hectic around here. I'm downloading my mail and responding to emergencies, but I don't even want to think about what my inbox looks like. Thanks to everyone who's sent their best wishes.
Mom is doing better. They took the NG tube out yesterday, and she started trying to talk immediately. The expected infection has been minor, at least so far. They have her on Cipro and Flagyl, and those appear to be working. Her temperature has been steady at about 37.8/100, which is only a bit above normal. She's very weak, of course, but everyone seems surprised at how well she's doing. She's not out of danger yet by any means, but she is doing better than anyone expected.
In fact, they're talking now about moving her out of Intensive Care and into a regular room sometime today, or tomorrow at the latest. I was concerned because she's still so weak, but the staff in ICU assures me that they wouldn't be moving her if they thought she should remain in ICU. There's an intermediate level of care called Acute Care. I asked about that this morning, and the nurse told me that almost no one goes to Acute Care. They have only four or six Acute Care beds in the whole gigantic facility, and I'm not entirely sure what they're for.
At any rate, things appear to be looking up. We're still very worried, of course, but I think we can be cautiously optimistic at this point. One good thing about having mom in a regular room is that the visiting hours are a lot more reasonable. ICU visiting hours are 0930 to 1030, 1400 to 1500, 1700 to 1800, and 2015 to 2130. Although the hospital is only seven miles or so from our home, the time it take to get parked and up to the room means that it's about an hour round-trip for each visit. I've been coming home after the morning visit, but staying there between the other visits, which makes for very long days.
I don't know if Baptist Hospital is the same as Forsyth Hospital, where mom went a year ago when she broke her legs. At Forsyth, they have only private rooms, and visiting hours were essentially 24X7. The visiting hours for regular rooms at Baptist are 1000 through 2000. For the first few days at least, I'll probably go down there for the 1000 start and stay through the 2000 end of visiting hours. I'll probably take my notebook and try to get some work done, but I know the chances of being able to do anything productive are pretty small. Perhaps I'll just take books.
Tuesday, 29 July 2003
12:36 - This is probably more than you want to know, but I figured better too much information than not enough.
The ICU called at 6:00 this morning to say my mom had taken a turn for the worse. They wanted my permission re-intubate her to help her breathe. They told me there was no point to me coming over before regular visiting hours, because the doctors were doing grand rounds and they wouldn't let me in.
When I did get there, they were still working on her and didn't let me in until 20 minutes after visiting hours had started. She's still showing signs of infection, and they're kind of at the point where fixing one thing breaks something else. They had to give her a couple litres of fluid to get her blood pressure up, but that in turn makes the edema in and around her lungs worse. They give her medication to boost her blood pressure, but that in turn makes her heart work too hard.
The doctor said they weren't sure why her blood pressure was low, but it's possible that the patch they applied to cover the perforated duodenal ulcer hasn't worked. If that's the case, the doctor said the only solution would be additional abdominal surgery. I told him that there was no way she could take that, and I didn't want them to do it. He agreed, and said they'd be very hesitant to even try it, because she'd probably die on the operating table.
At this point, I think it's purely a question of what is causing the problems and what can be done about it. If her infection is treatable with antibiotics and the low blood pressure is due neither to a leak in the patch or serious heart damage, she'll recover. At this point, we just don't know what's causing the problems.
Yesterday morning, they were preparing to move her into a regular room. The nutritionist was there to ask about which foods she liked. Mom was alert and talking. Yesterday afternoon and evening, things went down hill fast. But I kind of expected a bumpy road. I wasn't elated when things were going well, and I'm by no means giving up now that they aren't. I keep thinking of that Kipling poem that my father made me memorize when I was about 8 years old. "If you can meet with Triumph and Disaster, and treat these two imposters just the same."
Examining the matter objectively, things don't look good. But my mother is tough, and it isn't over until it's over.
Wednesday, 30 July 2003
11:32 - Mom is doing better again. I think that probably surprises the ICU staff, who don't know her like I do. Mom is still in critical condition, but after a downward trend yesterday morning and afternoon, followed by no change in the evening, she is doing a bit better. Her hands and feet, which were swollen by the edema so badly that they were actually exuding fluid, are now a bit less swollen. They discontinued the dopamine last night, and mom is maintaining reasonably high blood pressure on her own. She's still on the ventilator, and still hasn't awoken, but she looks better. Also, I was surprised when they told me they'd discontinued the antibiotics. Although she still has a slightly elevated white count, they can't find any evidence of infection.
At this point, I'm back to being cautiously optimistic. Mom may be 84 and frail, but she's also incredibly tough. The thing that worries me right now is the DNR order. Apparently, she signed a DNR last August at the nursing home. I spoke to doctor about voiding it, but he said that'd be hard to do unless she was conscious and alert. Mom doesn't want to be kept alive by extraordinary means or to live if her brain is damaged, but she does want to have reasonable measures taken if there's a reasonable chance of recovery. So at this point I'm afraid she might have a problem that's fixable, but that they'll let her go because of the DNR. I've told the doctor's my thoughts on the matter and explained mom's thoughts, but that DNR notice plastered all over the front of her status notebook makes me very nervous. I'm hoping she'll wake up and be alert in the next day or so and can tell them herself what she wants.
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.
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