I don't understand what you are doing to that poor little baby. Forget the future -- what is the quality of his life at the present time? How many things are being pumped into him? Would you want all that stuff pumped into you?
Believe me, I have asked myself the same question. This is a far from normal infancy. The only solace I get is that he will not remember this. He knows his mama & daddy are near and we touch & caress him as much as we can.
As far as the edema, once he get a bit more active again the fluids will work their way out. One of the big questions I asked Dr C before he was put on the Vec is will any of these meds cause brain or other organ damage? He is far more at risk for severe damage if we dont have the meds in place.
I know being on the outside looking in it appears to be such a horrific life for Drayke so far. It is all he has known. The doctors and nurses all tell us how much of a fighter he is and Drayke will let us know when he is done fighting.
He has not given up on this life and neither will we.
Baffled- I completely understand where you are coming from, but you need to keep in mind that this is their child. When a parent makes decisions for a child who cannont speak for himself, they must be sure that they can live with their choices. I agree with you that Drayke's quality of life right now is not good. And he very well may be nearing his end. But his parents need to be at peace with every decision they make, whether they continue to fight or decide to let him go. This isn't something they can do over and if they are not comfortable with their decisions, it will haunt them forever. I have worked with many families in this EXACT situation and I've learned that parents accept things in their own time. We can't rush it, even if it means we feel that we are prolonging the suffering of a child. Parents- Is there a new update today?
5 comments:
I don't understand what you are doing to that poor little baby. Forget the future -- what is the quality of his life at the present time? How many things are being pumped into him? Would you want all that stuff pumped into you?
Please don't think I am not praying for Drake. I am.
But the poor little guy looks so puffed up... and he's lived with needles and tubes his entire life. It just kills me to see him that way.
Believe me, I have asked myself the same question. This is a far from normal infancy. The only solace I get is that he will not remember this. He knows his mama & daddy are near and we touch & caress him as much as we can.
As far as the edema, once he get a bit more active again the fluids will work their way out. One of the big questions I asked Dr C before he was put on the Vec is will any of these meds cause brain or other organ damage? He is far more at risk for severe damage if we dont have the meds in place.
I know being on the outside looking in it appears to be such a horrific life for Drayke so far. It is all he has known. The doctors and nurses all tell us how much of a fighter he is and Drayke will let us know when he is done fighting.
He has not given up on this life and neither will we.
Baffled- I completely understand where you are coming from, but you need to keep in mind that this is their child. When a parent makes decisions for a child who cannont speak for himself, they must be sure that they can live with their choices. I agree with you that Drayke's quality of life right now is not good. And he very well may be nearing his end. But his parents need to be at peace with every decision they make, whether they continue to fight or decide to let him go. This isn't something they can do over and if they are not comfortable with their decisions, it will haunt them forever. I have worked with many families in this EXACT situation and I've learned that parents accept things in their own time. We can't rush it, even if it means we feel that we are prolonging the suffering of a child.
Parents- Is there a new update today?
You're absolutely right. I have no idea what I would be doing if Drayke were my child.
You do what you have to do.
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