"I am NOT Happy!"

My 2.5 year-old (DD2) said it with great vehemence and feeling at lunch today--"I am NOT happy!" (She had scarfed down the first half of her tuna sandwich and then demanded a MEAT sandwich--which Daddy declined to make.) She is one of the few people in the world who actually looks cute when she scowls. She's a little too cute for her own good. :)

This is a kid who started walking and talking at 11 months--when she was still wearing 3-6 month sized baby clothes (all the girls in our family are very petite)-- and hasn't stopped since. She is extremely articulate and loves words for their very sound as well as for what she can communicate with them.

DD2 frequently gets so caught up in what she's trying to communicate that she forgets to pay attention to what else is going on around her--if she's busy talking she can fall off or over just about anything because she's more interested in what her mind is doing than in where her body happens to be at the moment. Yesterday she fell off a stack of servers at Daddy's office and landed on her head, simply because she was telling a story and forgot she was sitting 2 feet off the floor. (She was ok, by the way, but she's certainly my most fearless and injury-prone child.) She takes after her mommy, whose mother thinks it's hilarious. :)

When she was first learning to talk, DD2 learned the word "animal" and was SO proud of herself--now she didn't have to actually learn the names of any of the animals. We'd point to a cow and say, "What's that?" and she'd get this cunning/delighted look on her face and shout, "It's a ANIMAL!" Well, she was right, wasn't she?

One of the first phrases she learned (and used a lot) was, "But Mommy, I'm suffering." I still don't know where she came up with that one, but she'd combine it with a pitiful look and trembling lip until I had to step out in the hall to laugh before coming back in and solemnly informing her that she could NOT have a third glass of water--it was time to go to sleep.

For the past week her trump card has been a minor scratch on her knee. It was pretty small in the first place and is almost completely healed now, but it's her excuse in any situation. She will be running around playing and dancing, but when I ask her to do something she doesn't want to do she experiences an amazing change.

First, she starts limping or just collapses on the floor, holding her knee with a look of intense pain on her face, and then she says in a breathy, low voice with a catch and a grimace in it (a very good imitation of the way someone talks when in real pain), "I can't (wash my hands/pick up my toys/come to dinner/whatever) . . . I have an ouch on my knee. --But, Mommy, it really hurts really bad! See, I can't walk." It's amazing to me that she can keep that tiny scratch in the forefront of her mind to pull out at the drop of a hat a good week after it had to have stopped hurting.

I call her Little Miss Personality Plus.

Maria Korp--she survived attempted murder, but can she survive the courts?

I wanted to point out this case in Australia, of Maria Korp who is in a PVS or some level of coma (depending on the article you read--one said she was in a "medically-induced coma") after surviving attempted murder and being locked in the trunk of a car for 5 days.

Her husband and his lover tried to murder her and now her husband wants to keep her on life support (although I'm not sure I would call it life support--it seems she just has a tracheotomy tube to hold her windpipe open and a PEG tube for feeding). He says she would not want to be taken off life support because of her Catholic beliefs. He also won't be guilty of murder if she stays alive, even in a coma.

The courts are (rightly, I think) not allowing him to have a say in what happens to her, but this case will bear careful watching to see what the courts and court-appointed guardian decide are in her "best interests."

This article at least makes it sound like she has a chance of surviving and maybe even recovering, saying she has a 50% chance of survival without the tube in her throat to assist her breathing, but will die in a few weeks if the feeding tube is removed (of course).

Apparently if there has been no improvement within 3 months of the injury they can declare treatment futile.

According to this article, which is more detailed than the first, she is in a PVS and in Australia it sounds like once you've been diagnosed as in a persistent vegetative state for 3 months they declare it a permanent vegetative state and stop trying to help you.

We need to pray for this woman between now and the 3-month deadline, which will be May 13th.

Mother's Day is coming up fast!

Don't forget to remember your mom on Mother's Day . . . and don't forget your kids' mom, either, if that's applicable. :)

What are you doing for your mom/wife for Mother's Day? Let's share some ideas.

In case you were considering going into the crime business, here are a few tips.

A number of recent headlines are ludicrous enough to create a primer on "what not to do when committing a crime".

If you steal valuables from someone else's property, don't talk about your great find on the news. Somebody is going to notice it if your story doesn't add up or if you don't actually have a hole in your backyard where you claimed you dug up buried treasure.

When you break into a car, don't lock yourself in the trunk.

Don't try to burgle a house by sliding down the chimney. In case you had any doubts about it, Santa is a fictional character who doesn't really get in and out of houses via the chimney--and you can't traipse up and down chimneys either. If you do get yourself stuck in a chimney, you'd better hope you get caught.

Don't ask a police officer for a ride when you're carrying marijuana--especially if you already have an outstanding warrant for selling drugs.

Don't walk into a federal courthouse when you're wanted for a number of crimes--particularly if you have a very distinctive appearance and you're wearing the same trademark disguise you use in bank robberies.

Don't assume a plastic bag being carried by someone walking their dog has anything worth stealing in it. Trust me, it's not worth robbing someone at gunpoint to steal the results of their dog's defecations.

When you're trying to make a getaway in a stolen car, don't try to go through a toll booth without enough money to pay the toll.

Why engineers make the best . . .

I found this on another weblog and thought it was cute . . . especially this part:

An Engineer boyfriend will dedicate an unimaginable amount of his time and effort to understand you. Engineers strain really really hard to understand their work. You can believe that they will try really really hard to understand women too, just like how they understand their work, once they believe that you are the one. So even if they don't understand you initially, they will keep on trying.

That's certainly true of my sweet husband, who happens to have a degree in engineering and works in the computer field. :)

One of the things I love the most about him is that he's not your typical "macho-male" who doesn't really think or care about deep thoughts and feelings. He cares so much about understanding and communicating that he's more intentional about starting those kinds of conversations and maintaining emotional and mental intimacy/communication even than I am. And, he's constantly committed to working out problems and changing things to make life better.

I never will quite understand why he thinks solving the hardest mathematical problems he can find is a fun recreational activity, though.

Interestingly enough, our oldest daughter (she just turned 4) has the mind of an engineer as well . . . she loves to find patterns in things, and her idea of fun is not to actually play with her toys, but to sort and line them up according to different criteria, or to solve Rubix cubes, mazes and puzzles. She can take a maze like this, look at it for about 10 seconds, and then whip through it without making a wrong turn.

This is a child who, as we're riding along in the car, will suddenly out of the blue say, "Mommy, I know two O's says oo, two E's say ee, and C-H says ch, but what does T-H say?" We'll be sitting around the dinner table and she'll say, "Daddy, will you give me some words to read, please?" She's actually more interested in how the letters fit together to form different sounds than in reading for the story's sake--I'm sure that will come later, but right now it's learning the rules and patterns of how the letters fit together that really fascinates her.

It's fun living with engineer-type people and seeing how they think and process. :)

What if it was 100% certain that Terri was PVS?

To be honest, if there had been no evidence Terri Schiavo was not in a PVS it wouldn't have been quite as disturbing, but I still would have disagreed with removing her feeding tube.

For one thing, whether someone has consciousness/awareness or not is really impossible to determine with 100% certainty. We don't have the ability to determine what someone else is experiencing, thinking and feeling and we know for a fact that it is possible for someone to be aware of and internally responding to their environment with absolutely no outward indication of consciousness. Awareness and consciousness are not things we can measure accurately if at all.

Look at the case of patient B in the study we've been discussing at http://bmj.bmjjournals.com/cgi/content/full/313/7048/13 --it took researchers 25 weeks (175 days!) of intense efforts trying to find any kind of non-reflexive response before they realized that if they sat him in the chair just right he could communicate with 100% accuracy by a small twitch of his shoulder. This is a guy who was thought to be completely unaware and unresponsive for about two years, but when they were finally able to communicate with him they found that he had been aware and able to process and mentally respond to his environment all that time. If they hadn't just happened to find the one way in which he was reliably able to communicate, after 25 weeks of intense efforts trying things that didn't work, he would still be being treated as and considered PVS to this day.

For another thing, the right to refuse medical treatment for ourselves or on behalf of a ward is not absolute. So when we give someone the right to withdraw a feeding tube in the case of a non-terminal patient with PVS, but not in the case of a patient with MCS or who is locked-in or quadriplegic, or a myriad of other conditions, that is making a judgement on the relative value and worth of a life. Frankly, I think that's wrong.

Finally, I am against removing feeding tubes as a way to bring about someone's death for a number of reasons. For one thing, a feeding tube does not replace or bypass any major organ or bodily function. As CBB pointed out, it's no more artificial or "life support" than a catheter or many other procedures which, along with PEG tubes, are used routinely both temporarily and long-term with patients who are fully-functioning in many other ways.

The main problem I have with removing a feeding tube, though, is that it does not "allow" a person to die from the course of their disease when they were going to die soon anyway. It literally causes them to die of dehydration. Dying of dehydration when your swallowing mechanism is weak may be "natural", and yes a feeding tube is artificial--but according to that argument my otherwise healthy mother should have been allowed to die of kidney failure instead of receiving dialysis when her kidneys shut down in her 40's (a congenital condition which I also have probably at least a 50% chance of experiencing as well).

To me, allowing someone to die simply because they can't swallow when the rest of their body (or at least the integral systems) functions fine is right on par with standing there watching a child suffocate to death in an athsma attack when you have a bottle of medicine in your hand that could open their air passages, or letting someone remain completely immobile when their legs don't work adequately by themselves because leg braces or a wheelchair are "artifical."

I am seriously considering signing a document that I don't want medical care or body organs removed until I experience both brain and cardiac death (I am an organ donor but I don't want my heart removed while it's still beating unless my head is completely smashed), but it appears that if I did sign such a document there is very little likelihood it would be honored.

(cross-posted on codeblueblog)

End of Life Decisions and the Law

Let's think hypothetically for a moment.

Let's say there's a patient who is conscious and aware of their environment, perhaps on an intermittent basis, but is not able to communicate very well--only inconsistently, or they are hard to understand for some reason. Imagine the person can communicate at some level, but not enough to give a completely dependable answer about whether they want to live, or they are for some reason deemed incapable of making that decision.

This patient doesn't have a living will, and there are witnesses who claim to remember them making statements that would support both sides--some say that they said they'd never want to live if they were unable to care for themselves and others say they were strongly against allowing people to die in very similar situations to what they now find themselves. What do you think should be the standards and procedures used in making a decision about whether to withdraw treatment or not?

Now imagine that this patient has enough limited understanding to form an opinion about whether they wish to continue living in their present situation, and they do not currently wish to die. They have been able to communicate that opinion. But they are incapacitated enough in one way or another that the courts have decided they need a guardian, and the guardian has decided to withdraw treatment because they think it's time for the person to die. What should be done then?

Next let's consider a situation where there's no indication the person is aware, but there is no evidence or conflicting evidence about their wishes.

What if a person has a living will saying they want all life-sustaining procedures except in specific, carefully-outlined exceptions, but when they become incapacitated the family decides to withdraw treatment even though it goes against their living will and their condition doesn't meet either of the two exceptions stated in the living will?

Finally, envision a situation where someone is terminally or seriously ill but fairly high on the awareness scale and able to communicate reliably. They have a living will saying they don't want any extraordinary means used to sustain their life, but when the family and the court decides to remove nutrition and hydration the person starts begging for food and water and saying they want to live. What then?

All these are actual situations that have happened here in the USA that are well-documented. In each of those scenarios there have been cases that resulted both ways--one patient in each of those situations might be allowed to live while another died, when the only significant difference between the two cases is where and by whom the decision is made.

This affects all of us--primarily because it's likely that many of us will find ourselves in a situation where ourselves or our loved ones fit one of the scenarios above. The laws and standards used to make such determinations in our country are something that each one of us can have an impact on, and that we should care about.

That's why I would argue that we need clearer criteria and stricter standards for making these decisions. In my opinion, a good place to start would be by raising the standard required for evidence to prove someone's wishes from "clear and convincing" to "beyond a reasonable doubt." It's a small step, but one I believe would be helpful.

What would you like to see changed, if anything? I'd love to have some dialog on these issues.

The Purple Puzzle Place II

Hi, everyone! I just opened a new blogger account and will probably be transferring many of my posts from xanga over to here, as Blogger seems to have a more flexible format.

Meanwhile, you can read my posts on my Xanga site here: http://www.xanga.com/home.aspx?user=purple_kangaroo_Angela