It's been a bad couple of days

We were back to the ER on Thursday. J has been in extreme pain on his left side. His CRPS is on his right side. CRPS is known to spread, but his spleen is also swelled, he has portal hypertension, and pancreatic issues are common in liver patients.
Yesterday was actually probably the worst since the ER visit where all labs came back ok so we were sent on our way. He couldn't keep any liquids down at all and because he was so easily dismissed again, he really doesn't want to go back to the ER. Choosing other hospitals is out of the question. His case is too complicated. But even his PCP told me to contact the pain clinic. Pain can and will do nothing if there may be a medical reason for the pain. And they shouldn't.

Basically, the ER doctor scared the heck out of me by telling me the signs of a ruptured spleen and sent us almost 40 minutes away. Was I to believe that is secretly what he was thinking and the labs came back ok? I hate trying to read between the lines with the medical profession, isn't there anyone out there who can say, I think it might actually be this very scary thing happening, but I don't have the labs to back up what I think may be going on to get the insurance company to cover it? Because when you're telling someone who has been there every step of the way with this child to watch for increased paleness, increased pain increased, abdominal swelling and possibly a bruise, thats exactly what I am going to think. This isn't our first rodeo.

Here are my boys before everything started. J is not a small kid, he never has been. He started life at 8 pounds 5 ounces and never stopped growing. Here, he's actually being nice and sharing with his brother. Notice the rosy complexion. He had a complexion most women would kill for. A rosy, peachy and creamy. With his brilliant smile and dark eyes, I was sure I would be in trouble once he hit college with the ladies. His smile lights up his entire being, and he has this booming loud laugh. When J is happy, everyone around him knows about it. Someday that complexion will return, and there are times we still see that smile and hear that laugh. And he's actually a little old for me to be worrying about the ladies with him. And I know I taught my son right :)

Both my boys a few weeks ago. Baby Brother still has his brothers glowing complexion and both boys have grown considerably. J's hair has a hefty dash of white in it now. Yes at 19. And he's loosing weight. More this week of course. We might be going back to the ER today. He can't afford to be dehydrated. It causes the headaches to be much much worse. Pain doesn't scare me. I see him dealing with enormous pain on a daily basis. Not knowing whats causing the pain, that scares me. If it's the CRPS spreading, he'll have no choice but to deal and we'll work with Pain to get him to a level he can control. But if something is going on in there... The consequences can be frightening. His appointment with Ortho is Wednesday. Thank goodness because his shoulder and hip keep coming out of joint. Chances are though that their first option will be to throw medication at the issue.

Right now he's sleeping. He's was up from Friday at 2 am until around 10 am this morning. He isn't bi polar, but he does have the highs and lows especially with his sleeping pattern. Since Wednesday, he's drained the 40 gallon hot water tank no less than 3 times a day trying to get relief. The doctors see a pain patient that they can't help until something physical shows up, I see my baby boy suffering and trying to deal with it the best he can. There is no more helpless feeling than watching your child suffer. Yes he's a man in the eyes of the law, but he's still my child.

When he can't get his hip back into place himself, either Jim or E help. I don't have the physical or emotional strength. I mean if I absolutely had to, I could, but I would probably pass out or bawl like a 2 year old who lost their blankie. I can't even describe it. They twist and stretch while he pushes and twists until it goes back in. He sounds like a grizzly bear caught in a trap as its happening. With his shoulder, I've watched him run into door jams to get it back in.

Thats only one part of what the outside world never sees.  We try to separate the issues.

  1. The liver
  2. The headaches
  3. The pain in his right side (CRPS)
  4. The newer pain in his left side (unknown)
  5. His joints (unknown but comes out of joint)
  6. The psoriasis
It's not always easy. Because of the liver and headaches, there are a lot of medications he can not have. NSAIDS like ibuprofen and celebrex can cause rebound headaches and they're hard on the stomach and kidneys. Tylenol can cause rebound headaches and is liver toxic. Narcotics can cause rebound headaches and are both addictive and hard on the organs. We toe a very narrow line and although he is the one in so much pain every day, Jim, E and I love him and its very hard to see his suffering. 

And knowing that there is research out there linking CRPS to autoimmune disease, knowing that psoriasis and psoriatic arthritis cause joint damage and that CRPS causes swelling and tissue damage as well as bone changes, and that there are medications out there that will suppress the immune system that would possibly help not only 3 of his main issues, but could help get him off the medication and get him more active to help the issue that could possibly kill him makes me sick. 

Knowing that Japan is doing research with stem cells from the patients body that might actually cure cirrhosis and better his chance of never needing a liver transplant, is maddening. Because it could be decades before we see it here in the states. His own body could be used to save his life... Imagine that?



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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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