I'm worried about them. His fingers are so swollen that you can't see the normal knuckle wrinkles anymore. Look at the size of his thumb. He's 8 and it's comparable to mine. You can't pinch skin either. They are like swollen sausages. Tomorrow he has an appointment with his Urologist and he also has a scheduled ultrasound. Hopefully they will have some answers although I'm not holding my breath. Anybody have a guess as to why? And PLEASE do not tell me his wraps are too tight. They aren't.
Yesterday I had Ben off his vent for 6 hours. I'm sure his pulmonologist would have a fit but I did it anyway. I want him to not be so dependent during the nicer weather so we can get out more. I feel as if a lot of his increased vent needs were due to still being sick down in his lungs. They sound really good now. I might even ask for an x-ray just to make sure I haven't collapsed anything. If his left lung still looks good, I'll ask his doctor to start weaning some more vent settings.
Today we are off to church. It's the second week in a row. Looking forward to many more.
6 comments:
Can't think of what the problem could be for Benji. Also, I think his cheeks look a little fuller to me than usual unless it's the angle at which the picture was taken. He is so sweet! Hope all goes well for his appointment tomorrow.
I can't offer any sort of advice for his hands. Just wanted to stop by and give a little virtual hug... that's all. HUG......
Wish I had some suggestions. Lots of hugs and hope the appt. provides you with some solutions.
Woohooo on getting off the vent for so long. Way to go Ben.
Are his feet and or toes the same? The obvious answer is fluid retention - but may not be as simple as that. I think you need to check what he is peeing out compared to what he may be taking in. I'm not sure what the normal ratio would be for a healthy person but with Ben and his reduced functions there may need to be an adjustment.
You guys are cute.
-Dad
Look at his little thumb! It is so swollen, poor bug. Are his feet that way as well? I would definately ask about it.
It's awesome that he did well off the vent! :)
What's up with that thumb! I can't believe you guys are the same size! What about heart functions? When has that been checked last?
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