I get so frustrated trying to explain things

My son is sick. He has been sick for over 3 1/2 years now. I am extremely proactive in his care. I watched a gall bladder removal on YouTube, I watched a liver biopsy and an ERCP. I research everything. If I don't understand a word, I research it.

His diagnosis, so far, include:

I say so far because he also has something going on with his hip and shoulder that we need to see an Ortho for. He has eleven doctors, it should be more, but we dropped some (neurology, DRG...)

For the past 3 years, he has gone through a lot to control the pain. He is extremely limited due to both the liver disease and the pseudotumor in what he can take medication wise. Narcotics can cause rebound headaches, trigger points caused rebound headaches that were worse than the actual headache. Pseudotumor can steal his eyesight, cirrhosis and portal hypertension can steal his life.

His pain regimen is researched completely by 2 very talented doctors as well as agreed upon by his hepatologist. We knew going into it what the side effects and risks could be. When we go to take him off of it, he will have to be watched very carefully because it can cause horrific hallucinations. And it has been known to spike AST and ALT levels (although in the cases with that, they returned to normal with no permanent damage after.) Thankfully, his AST and ALT levels have been normal for almost a year now.

Right now, we are on what I call "watch and wait" with his liver. The numbers are ok, theres not a whole lot they can do for him until he gets worse or if we get lucky and we find a way to control his pain. We keep hitting road blocks in that area, but we trudge on. I don't make excuses for him, but I will explain his regimen the best I can. He uses a combo of meditation, distraction, and various medications. We've worked for 3 years to get this to where it might semi work. Ordinarily it takes the pain down to a bearable level. Without those medications, no one, not even the lowest form of life, deserves to live in that kind of pain. Honestly, no one could and remain sane.

Please believe me when I say that I know the risks of his medications on his various illnesses. But right now, the benefits outweigh the risks. Once that turns, we will have to look elsewhere. But at the time, these were our options: The medication or living in debilitating, horrific pain.



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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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