Land of Confusion

I remember long ago -
Ooh when the sun was shining
Yes and the stars were bright
All through the night
And the sound of your laughter
As I held you tight
So long ago - Genesis


Every story needs a villain. In my story my son is the victim and aside from the disease I have demonized his medical team. The medical team who advises me and gives me all the clinical outcomes in matter of fact tones with little to know emotion and who frustrate me to no end. I like a lot of these people. They attempt friendly, always cordial, with the exception of a few, and Another time, another place we may have even have been friends. I can sometimes catch a swatch of the human they are outside of this place. The one who understands every tear drop I cry over this boy.


I spoke with a nurse in ICU about the crazy. The kind she had to even admit she can't go home to explain. You don't get much sympathy from family or friends when you detail how you tied another human being up, or muzzled them onto a ventilator for their own good. Because although there are technical terms, and there are very valid reasons for why these actions take place, and here the actions make the utmost sense even to me: the actions remain actions a lay person could not properly understand or appreciate. So while every medical professional here has done everything right by medical standards, they are judged by lay people that no matter what could not understand.

Even I get tired of explaining. That's why I don't answer all the texts and calls. I get tired of having to explain from the beginning the whys and wherefores. I am just tired period.

Jason's blood clot threw me for a loopty loop. Dr. Honig gave me a roaring review of how great a candidate Jason was to get over this disease, but his voice dropped and his quick smile faded when he mentioned the complications. The complications are what make the sinister Michael Myers music start and makes the panic rise. Jason was in ICU and the attending doctor and his team concluded that he would undergo a particular regimen which would thin his blood and eventually dissolve the bloodclot. Now in the step down unit the doctor's have a difference in opinion. Now they want the PICC line removed which poses a chance that Jason's blood clot could migrate. If I don't move it, they advise that the blood clot might not dissolve.

This difference of opinion is what makes me look for a villain. They each come to me like an x-boyfriend, playing on my emotions trying to get me to concede to their form of treatment so they can have their way. I want to believe them, but they completely contradict themselves and offer me the most soundest of logic. Each team presents a case that counters the recommendation of the other. The very stark "Listen this is what we are going to do" one morning to the less than 24/hr "This is what we intend to do now" with no change in Jason is the contrast that keeps me on the edge of my seat, panicked and afraid. Staring at Jason with tears in my eyes, hysterical over the exposure he has to the unknown. This professional advice from people who I have no choice but to trust and believe - terrifies me. Who is right?? Who is wrong?? How do I decide this without hurting Jason. It's all opinion. It's all based on preference. None of which is mine.