My daughter needs surgery on her feet and ankles. We've been putting it off because although her legs are twisted and her feet are flat, it didn't seem to bother her or impair her mobility. Until now. Plus we were waiting for her to grow more so the bones would set properly. But now it is becoming a problem, and she is complaining of pain in her feet and knees. We set the surgery appointment for April and now I'm trying to get everything ready for her recovery. Now I'm scared. There is a good chance she will not recover fully after the surgery because of muscle atrophy from being laid up in casts for two months, because she already has low muscle tone. Am I doing the right thing? If she gets the surgery, will she recover? If we don't get the surgery, is it okay to leave her in pain? She is having problems walking, so chances are she'll be confined to a wheelchair eventually. It seems like a good idea to have the surgery and take the risk. But is it? How do you know what decision to make when all of them seem bad? Am I about to make things worse for my child? What do you do when faced with something like this?
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California
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Re: How do you know what choice to make?
Sun, January 21, 2007 - 7:55 PMI don't know what your daughter's condition is or how old she is, but have you looked in to local support groups? I also know (for me, anyway) doing a bit of research always made me feel more sure when making tough decisions.
much luck to you...
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Re: How do you know what choice to make?
Mon, January 22, 2007 - 6:43 AMI can't possibly tell you whether you are making the right decision or not. Even if I knew your daughter or your situation, I couldn't say that. BUT, it sounds like something you've been expecting for quite some time. Sure you've understood the risk vs. reward ratio until now, haven't you? Or has some new variable been introduced that increases the risks? If not, then it's possible that your nerves are getting the best of you and that you're starting to get "cold feet". Which is an understandable emotional reaction. But if this decision was made on a solid intelligent and logical basis, that is perhaps a better guideline.
But if you have sincere doubts as to the necessity of the surgery, a second opinion is always a good idea. It may delay the surgery a bit to seek a second or third opinion, but it will make you feel more confidant about the decision you ultimately end up making.
Good luck, and please keep us up to date. -
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Re: How do you know what choice to make?
Mon, January 22, 2007 - 8:18 AMHere is what I would do, trust that the surgery will help her.
She will be able to recover, muscles are designed to work and our bodies are designed to heal. If you give her the belief that she will be able to use her legs, ankles and feet after exercise and hard work, the encouragement will set her in a mind set that this is going to help. If the children believe that their bodies are capable of healing, half the battle is won.
Remember that western doctors will usually give you worst case scenario so that they can cover their ass, if things don't turn out. It's a common approach, part of their rap, it's how they're conditioned in medical school and in practice to cope .. they do it to protect themselves.
I'm not saying that it is wrong, it almost kind of essential, considering all that they have to confront in dealing with families and surgical outcomes.
But technology is on your side!
This will not be the first time that this particular surgery is performed. It has helped others, that is why it was designed, and it can help Rhia too.
I would bite the bullet and let them go ahead and help her. When you're on the other side of it and she is healing and making progress and you are rested and renewed, you will be glad that its behind you. It you postpone it, you may be giving in to fear, which is very real, but which also can cause you to freeze up. Doubt, fear, indecision, all of these emotions are very real, they've always have a way of creeping in and attempting to sabotage my confidence and stability when I've been challenged with tough decisions, especially when I'm tired and stressed.
Can you step back and look at this without emotion? I hope this statement doesn't sound trite, its just how I talk to myself and how I deal with one of the greatest dilemmas of our times, the blending of modern medicine with humanity.
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Re: How do you know what choice to make?
Mon, January 22, 2007 - 4:02 PMWow, you all have already helped me. I knew asking here was a good place to start. I am definately getting cold feet. I felt better about the surgery when the decision was made. My partner and I looked at all the pros and cons and decided this was best. She will be more stable and have an easier time walking if it is done. If we do nothing, it will just get worse and she'll lose mobility. It's the right choice. If I step back and breath, try to separate my fear from my choice, I know I'm doing the right thing.
But wow that fear is powerful! It creeps up on me when I'm not looking. I will actually become breathless, like I've been punched. I know I need to get this under control so I don't transmit it to my girl, but it is really hard.
I'm seeing a councelor to help me channel my fear better. Support groups are far and few around here. I live pretty rural. That's one of the reasons I joined this group. I love the internet!
What do you do when the fear throttles you? -
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Re: How do you know what choice to make?
Tue, January 23, 2007 - 6:39 AMHave a panic attack; have a strong drink; cry uncontrollably... the usual. I don't think that I've yet dealt with the kind of fear you are dealing with, so I can't say for sure. My boy does not have physical disabilities, but he's a five-year-old non-verbal autistic. What gets me breathless and panic-attackey is thinking about the future, when we are no longer able to care for him. Which is a very very very long time away, but still, we think about it. And it makes me tear up almost every time.
So I don't really have any suggestions for you, Terena. Just empathy. -
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Re: making it through the fear ..
Tue, January 23, 2007 - 11:50 AMYour fear is powerful because your love is powerful.
Here's what I do to deal with fear ...
first off, I expect to have massive-off-the-charts emotion from time to time, the key here is that I 'expect' it.
We're human, remember Meg Ryan's line in 'Courage under Fire' after her military squad mutinied against her and she had re-gained control and then began crying, her corpsmen accused her of being weak, she stood up to them and shouted 'they're only tears, they don't mean anything!' That's how I look at it, we are powerful, emotion is not a sign of weakness, its a sign of how much we love!
From my experience, when overwhelming emotions happen, I am usually projecting myself into an unknown future, (ie. what if Ena dies on the table during surgery, what if she doesn't recover and comes back to me with severe physical or mental deficits, etc.).
My fear is seldom based in current reality.
When I start freaking out, (and I've had my share of it over the years), I just ride it out, because I know that its going to end eventually.
I'm with Heather, cry uncontrollably if you need to, it will end eventually and you'll feel better. I have a friend who is a doctor, her remedy is to rent sad movies from time to time so she can cry and get those emotions out, its ok to cry, its a built in pressure release valve.
I have to be careful of the strong drink sometimes, it can propel me further into the emotion, alcohol has some depressive properties, but sometimes that's good too, I get it all out and then feel better.
Finally, I have from time to time taken anti-depressants. I am taking them right now to deal with this upcoming surgery, Wellbutrin works for me, but everyone is different. I tried other meds and they numbed me out and killed my libido, the Wellbutrin does neither for me, so I consider it a tool.
Good luck Terena, I have log off and go pick up Ena at school.
Later ...
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