Stuck on Scared

Well, I read his test results last night. His blood panel looks great. His ammonia level is high. I didn’t want it to be high. Actually it’s only slightly high, the norm ends at 33 his is 34. But the funny thing about liver disease and ammonia levels is that they don’t need to be extremely high to cause bad bad things. And by funny, I don’t mean ha ha, I mean up yours. 

I’m not going to over react. I know this isn’t the end of the world as we know it and that with medication, it is completely controllable and he has an excellent chance of going back to the lovable, annoyingly contrary Jamey we know and love who doesn’t forget that his father is sitting right beside him for a cereal jam session. I’m more annoyed over the fact that it’s another thing ignored by his team for so long because I choose to educate myself on his condition. Another thing ignored because I know my son so well.

 We’re told that a parent knows their child the best. We’re told we are their best advocate. But when you’re dealing with a Chronic illness, I’ve found that educating yourself and letting them know you do doesn’t sit well by most doctors. Their ego gets in the way. It almost seems like they feel you think you are far more educated than them. The truth lies in the fact that if we were, we wouldn’t be sitting in that office waiting for a test result that scares us out of our minds about the outcome because we read up on it.  The truth is that if we didn’t feel that we needed their expertise, we wouldn’t be there. 

It’s frustrating to say the least. When you’re dealing with an adult child that doesn’t always feel comfortable telling them all the important information or forgets something important, it’s even worse. Adult care givers are very often ignored by doctors in general.  My mom had them believing that she was doing all her care, when at times she couldn’t even dress herself. I won’t let them do that to Jamey. 

We should be getting a phone call later today. In my opinion, they’ll want possibly a retest in case of a false level, or to watch and wait to see what happens. Possibly, he’ll be sent to hepatology for their thoughts. That will irk me further, because it’s a simple prescription to control. To bind and remove the toxins, he needs to poop. Once he’s having several bowel movements during the day, he’s back to normal with no ickies messing with his brain. 

Yes, I’m jaded. Yes, I’m critical of the medical profession. It’s my son they have been playing around with for almost five years now. I actually like the team we have right now, but they all should know by now that I’m in this for the long haul. They have to deal with me. And as he gets sicker, I get scared. I read, I need to know whats happening to him and have the resources to find out. I use both peer support and literature to do so. Medical journals, message boards, groups, articles… You name it, I’ll read it. He’s my baby in giant clothing. I want him to have a future.

Well, that call should be coming any time now. Considering that his hepatologist’s  is two floors down from his PCP’s, they may discuss things before that call. We shall see. 

What is frustrating you lately?