12/8/15

And currently:





Well, we're home from Pittsburgh. Not only was traffic horrific and it took us over an hour to get to Harmerville, but the news is frustrating as all get out. Knowing what we do about chronic pain now, it makes sense, but it's still frustrating. She wants him to watch a video and try to get on a schedule of activity. She couldn't answer about the antibiotics working to ease the pain. She said it might be something that can't be explained. 


He's being refereed to the headache clinic (Yay another specialist said no medical mother EVER) and at his eye appointment this month, she wants the doctor to run a special test looking for a recurrence of the pseudotumor cerebri. (Because going blind on top of terminal illness is a horrific thought.) 


Yes. I'm bitter. Yes it really shows in this post. But his doctor is good. The way she spoke to him and explained things... That really makes a lot of difference. I might not like what she said, but that doesn't mean I won't follow her advice. I don't like any of this. Pseudotumor means we'll need a neurologist unless theres one at the headache clinic (which there has to be, I'm being an idiot there.) I just want him healthy. I want him to live a normal life. I want to play with my grandchildren. 


The eye appointment is in 20 days from tomorrow. We'll know then what Dr Neff's opinion is and how much damage the previous pseudotumor did. There are changes in his eyesight. I don't know if it's natural progression or if it is from the pseudotumor. We have a lot of those. Is the shaking from his liver, his medication or his headaches? Is the nausea from the pain in his side or his headache or his liver? Is the pain CRPS, or a bile duct injury? Why does a 19 year old have cirrhosis of the liver? Is the liver, headache or heads causing the memory loss and black outs? We know the headache is causing the dizziness. Hey, thats one out of a million. 




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@TerrorMom

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I guess I'm actually supposed to fill this out. I'm a passionate medical mom of a 19 year old liver/CRPS patient. My goal with my blog is to raise awareness for his conditions. And to hash out my feelings about it. There are a lot of raw emotions when your life is suddenly stalled by any illness, let alone your child's illness. 

I'm also attempting to either "find myself" or "remake myself". So much of my time and energy goes into caring for both my mother (end stage COPD) and son, along with trying to be Mom to my younger son and a wife, that most of the time I feel lost. I tend to put myself on a back burner and right now I'm burning out. 
 

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