Monday means that it’s time for Meandering Mondays and more of the story of the path our family is currently on. Last Monday, I admitted to being stuck in place concerning Jamey’s health. We have some tough decisions to make. With the fact that Jamey is a young adult, he has the majority of those decisions to make, my job is to find information to help him make an educated decision. It really isn’t fair that our laws and society basically put teenagers out there to be smacked in the face with life decisions before maturity catches up with them. Many go from having to follow their parents rules and having them do everything, to having only themselves to rely on. I won’t leave my son’s in that position. Jamey has been involved in his healthcare decisions since he was first diagnosed. I’m doing the same with Ed.
I haven’t been easy on the staff at Children’s. I honestly feel that they gave up on him too soon. I remember discussing things with Jim when Jamey was 16. I felt that GI was just going to wait until he turned 18 and transfer him out. They tried when he was 17. I haven’t been insanely psycho, call the police because she’s dangerous difficult on them, but I’ve pushed. Sometimes I feel like it wasn’t enough, sometimes I feel like it was too much. They’ve really messed me up mentally. I’ve lost confidence in that little voice that tells us when something is very very wrong. Children’s is a great hospital. They save lives. Really they do. And I will continue to take Ed there. From the very bottom of my soul, I feel that his pain is because of that Gall bladder surgery. Pain is a known risk. Bile duct damage is a known risk.
On Wednesday of last week, I had the opportunity to finally meet in person the woman who helped me file the grievance on Jamey’s surgery. She gave me her email address in order to contact her about the recommendations for a GI second opinion. I did that this morning. It’s the first step.
A second opinion isn’t without it’s own set of risks. Both to our confidence and physically as well as financially. I say our confidence because he has such a deep distrust for doctors now. He feels like they think its either all in his head or that he is faking it. I stand to look like a raving lunatic to yet another set of doctors. I have to wonder what any of them would do in our shoes? Or if they can even put themselves in our shoes? Four years ago, he was a seemingly healthy young man with dreams, with friends, with a future. Today he has his mother arguing with him to eat something, anything. His muscles are breaking down. He can’t walk a block without becoming exhausted. At one time, he lifted 250 pound linemen out of his way.
The physical risks can be more dangerous. He’s a surgical risk because of both his liver and his size. He has an enlarged spleen and early portal hypertension. Medication has created a Pseudotumor Cerebri in the past. Infection is a huge worry because antibiotics are hard on the liver. His body doesn’t metabolize medications the way it should. There are definite bleeding risks with liver disease. In the past four years, he has been through so much with so little results. It’s tough to say this, but if he had been diagnosed with cancer, at least we would know what we are fighting. Right now, we are fighting the very services that are in place to help us to no avail. I’ve gone as high as I can with in the system. Is it really too much to ask for him to be able to go on with his life without this constant pain? To give us a possible fighting chance to save his liver before failure?
He knows he will never play football again. He knows he will never get his Junior or Senior year back. He will never have prom. He won’t be voted worst attitude for the senior class. He won’t have a cap and gown, because who wants to walk with a class three years after you were supposed to graduate? He won’t have high school reunions. But, if we can get the pain under control, he can have a high school diploma. He can cheer his brother on from the sidelines. He can move on with his life, go to college and live out the rest of his dreams. His quality of life right now is next to none.
The Spinal Cord Stimulator option leaves a lot to be desired. It doesn’t address the why. It treats the symptom, not the problem. It holds the very same risks as a normal surgery with the added one of possible paralysis And it may not work. I honestly don’t know what could happen to his mental health if he goes through yet another unsuccessful procedure. I already live in fear when things get really bad with a pain flair, that he will decide that it’s just not worth it.
So, yet again, we look at this crossroads with confusion and tears. It feels like a no win situation and the one loosing the most is Jamey. He’s lost all faith. He is so angry. He believes that there is no God because God wouldn’t leave people suffer like this. He’s lost faith in humanity, because no one is willing to help him. Especially the ones who took an oath to do no harm, yet won’t even try to do more than wait and see if he lives or dies. He’s facing life long horrific pain if the doctors are to be believed. And nothing has helped give him any relief for long. He’s looking at a very bleak future with a perfectly sound mind. And how can I give him faith when I have none myself?
I am just as angry as he is. I may not feel his pain, but I have the emotional upheaval of seeing his pain. I have the mental torture of knowing that there is nothing I can do to help him. And I have the guilt to live with that I can’t get anyone to listen to him. I am so exhausted from fighting and getting no where. The frustration of having them look at me like I’m a total loon is real. The ones who don’t know me think that I’m dragging him through this against his will. They believe that he is so weak minded that he would let his Mom do his dirty work. But he is exhausted from trying to simply live. He needs me to be his voice. He needs me to tick him off and continue to push him. It’s a complicated dance to keep him going without pushing him too far. I would give up everything all over again just to see him be able to go back to school.
Let’s see what this week brings. I need to continue to move forward. I’ll drag him along when I have to, but I will always stand by his side.
Check out all my Meandering Mondays for the full path.