5 days ago
Sunday, September 20, 2009
Many of you who know me, know that we have issues with the hospital in our state. Many of you know why, and for those of you that don't, I can't really talk about it.
That being said....I am beginning to wonder if they have just given up on Rhett.
Yes. I get it, they are afraid to touch him, and we make sure that everytime we step foot in that hospital, it is crystal clear that anyone who touches him better be on their toes and not screwing things up. Maybe that's a bad thing in certain ways. But in the same breath it's a good thing as well. I won't just stand by and think that they know what's best for him anymore. I won't put my faith in someone who has no idea what this child means to me. But when you get to a point where it seems like they are letting him fall through the cracks, it makes me angry.
We've struggled with gaining weight over the last 9 months. Okay, I'll be honest...he's loosing it. Last year at this time, just before his 3rd birthday he was 37 lbs. This year he is 27 lbs....dripping wet with his clothes on.
His general health is fine. He eats well, and he gets bolus feeds of Elecare throughout the day in his feeding tube.
But his heart is wearing him out. His tricuspid valve is leaking pretty good and he's burning lot's of energy.
The above picture says it all. You can tell that just over the last month there has been a rapid decrease in how he is feeling. He's tired, you can see it in his eyes, see it in his step, as well as his sleeping habits.
I don't think it's fair that the Dr's keep wanting to put off his valve replacement until he's older. I feel like they aren't looking at the whole picture. They are just looking at the fact that the older he is the less surgeries he'll need since that valve won't grow with him.
Don't get me wrong. I totally understand that. I agree with it to a point. But the thing is, is that I don't understand why they have to let him get so sick before doing the replacement. I don't want another surgery. I don't want to ever step foot in that ICU again, knowing that just around the corner my perfect little boy is lying in a hospital bed on life support, while the rest of the world goes on with their lives.
However I don't enjoy just sitting here watching him waste away while his health declines, and the Dr's just sit on the sidelines going hmmmmmm.....
I find myself lately lying in bed with him. Running my fingers across all of the scars on his battleground of a chest. He has had to fight so hard for everything that he has accomplished. I don't think anything has ever come easy for him.....I'm not sure if anything will come easy for him. But I know that whatever he does, I will be there to fight right along with him.
I'll always pick him up when he falls, I'll never leave his bedside when he's sick or had a surgery. I'll always fight for him tooth and nail. I'll never stop.
I'm not afraid to hurt anyone's feelings....if I have to take him to a different state so that he can get the care he deserves I will.
He is my child. My life. It's why I'm here.
at 8:54 AM