Tuesday, December 11, 2007

How you know there is nothing they can do for your child..

...when they start to focus on you.

Yesterday we took Jocelyn for her appointment with a specialist who focuses on the problems with her spine and hip. We got pretty much what we expected, but some, sort of good news. Although her spine is curving and will likely eventually bend her so it starts to compress her organs on that side, there is a small chance it may not progress any further. Also, it will take many years, (probably 4) before it gets that bad, so we have time. The same thing for her hip. Although it appears to be starting to dislocate, there is a chance it will progress no further. We have about 2 years before that becomes critical. We can pretend to be a normal family for a bit longer.

The real interesting part comes after talking about her. This is when he talks about us, the parents, and alternative therapies. Alternate therapies are those with no studies showing they work or do not work. Alternative therapies range from stretching (no studies prove that this will help with her hip) to all sorts of weird, witch doctor type stuff.

effect, something like 40% of people will report improvement from anything as long as they He did not propose or endorse any of these things. He made it clear it is up to us and that we must look at it. (The wife has been doing a lot of research on this stuff and seemed to know more about some of them than he did. Also, due to the placebobelieve it may help.) The only caution he gave us is the effect that alternative therapies can have on a marriage and families. There are people who have mortgaged their house to pay for this stuff. As well, usually one spouse wants to try anything while the other thinks there is no point, and this leads to serious problems when the family is poor and living on the street and one spouse thought it was a waste of money.

So, it seems that since there is very little we can do for our daughter, the biggest problem we face is dealing with the effects of that and the possible break up of our marriage/family.

For me, I want to do what is best for our daughter. To me, that seems to be making her as comfortable as possible. At this point, there is nothing we can do to treat her problem, only the symptoms. I am not willing to mortgage the farm when it won't address the problem.

If there was even a slim chance we could treat the situation with her brain, I might feel differently.

Friday, December 07, 2007

Try these shoes on for a while

Robert Latimer is back in the news. He was up for parole this week after spending the last 15 years in prison.

There has been some discussion of this issue at SDA and Halls of macadamia, two blogs which I frequent.

I wanted to give a bit of perspective on this issue from someone who may be facing it in the future. My own opinion of Mr. Latimer is that while I don't condone what he did, I can understand the circumstances. He has more than paid his debt to society and should be released.

A lot of the comments I have read on this issue come from people that I think have not examined the situation.

Try this.

Look at your child. Bring up all the feelings you have for that child. All the love, the desire to protect, the feeling that you would do anything for that child. Now, imagine that when that child was 3 months old, you were told that, not due to anything that anyone did, through no fault of your own, it just being "one of those things", your child was severely brain damaged. Although that is not exactly true. The truth being that she does not have much of a brain to damage. In fact, you figure her brain is about 25% of her twin sister (the doctors don't tell you this, it is your estimate, based on the fact that her head is noticeably smaller than her sister and you saw the scans of her brain, and there was significantly more black areas (areas of nothing, just fluid), than white areas).

At your pediatrician's you ask how long she is expected to live. He says 5 years, 10, maybe 20, maybe more, we just don't know. However, he will tell you that he he has never seen a baby with this much damage survive (the doctor is in his sixties and has probably been practicing for over 40 years. He is well known throughout the city and is respected as a good doctor). He then suggests that you may want to consider how much you want to treat her when she gets sick. He tiptoes around the point by stating that in most of these cases, the baby gets pneumonia from fluid in the lungs and most parents deny extreme measures (ie antibiotics. (when did antibiotics become extreme?)) and after a few bouts of pneumonia, probably over a number of years, the patient dies.

Your wife drives home because you can't stop crying. And I mean crying, like uncontrollable sobs, while the words, "how can I make a decision to let my baby die" run over and over through you mind.

Fast forward one year. Your daughter is not in pain, but it is a struggle to get enough of the food she needs through the tube in her stomach. She throws up at least once a day, and you have spent the last year changing her feeding habits, formula, time and the rate in an effort to minimize it. When not asleep, she sounds as if she is fighting to breathe and not to choke. You have an appointment next week where you will discuss what to do about the fact that her muscle contractions are starting to force one hip out of alignment and she will probably dislocate it soon. Her spine is severely curved, even for a baby so young. At least she doesn't have seizures (they think she does not have enough brain matter to have them).

class or girl Now consider that, with such little brain matter, she is not going to get better. Her quality of life will not improve past that of a month old baby. She will never walk, talk, or feed herself. She will likely never reach for anything voluntarily, to form a desire to do something and then do it. She will never be able to say I love you daddy. You are not even sure what she can see or hear, although she does seem to, at times, turn towards the sound of your voice. You decide that you will take that as a sign that she knows that you are her dad and you will hold that as tight as you can.

However, you cannot live in a fantasy world all the time. You have to fact the facts. No amount of physical therapy, visual therapy, stimulation or anything is going to improve her quality of life, even though you do all of them. What else can you do? She is your child. Now, imagine forward ten or eleven years from now. The curved spine and hip are not going to get better. All they can do is slow the rate at which they progress. What will her hip and spine be like in then, if she is even alive? How much pain will she be in? What will her quality of life be like. Remember also that you have other children. You want their live to be as normal as possible. Do you want your other child to miss out on ballet and girl guides because of her sister? Do you want them to begin to resent their sister? What if your disabled daughter outlives you? She is your child, it is your duty to care for her, but do you really want to burden her sister with that when you die?

Welcome to my world.

Try putting yourself in Mr. Latimer's shoes before you condemn him.

Annoying Telemarketers

We recently got high speed internet access. Before, I would spend much of the day connected to the net at dial up speeds, browsing blog, read news, etc.

Now the phone is free. This is a good thing, as now I don’t mess calls about Jocelyn’s medical appointments.

However, the down side is now I am rushing to answer the phone and am getting all the telemarketers.

Citibank is the worst. We don’t have any business with them at all, which I suppose is why they are so insistent. They got the wife’s name somehow and they call at least once a week. Of course, she is never here when they call, so they always say they will call back. I few times I pretended to be her, just to see what they want (They don’t even have her first name, just an initial, so you know they are selling something). They just want us to use their credit card with the “new, low introductory rate offer”. How stupid do they think we are? Nine percent for the first few months then up to 18.75% and a yearly fee. Some deal.

Once, I thought I would test them a bit (Sometimes its nice to talk to an adult) I said I was interested but my present credit card has no fee, and I want a lower average rate, what can you do for me? The silence on the other end was deafening. They actually hung up on me.

Of course, that gets tiring real quick. So after only a few days of answering the phone where 90% of the time it is Citibank, I have had enough.

The next time they call I am going to threaten them by saying I will blow an airhorn in the phone if they do not stop calling. A Man’s home is supposed to be his castle and time is precious. I shouldn’t have to spend a portion of that fighting off salespeople.

Oh, and don’t talk to me about do not call lists. I should not have to call someone to tell them to stop calling me. I should be able to tell them when they call not to call anymore.

Why would I ever want to be their customer if they do not respect my wishes not to call me?