I'm exhausted. Lisa and I have been staying at the hospital on shifts with Jesse. Our semi-normal lives have been suspended while we try to get Jesse back to health. You might ask why the parents of a 20 year old man have been babysitting him 24/7. I'll tell you. In a nutshell, we've had to advocate for him and decent basic care every step of the way. It's been a grueling battle. He began feeling ill last Thursday night. That was the last time he ate or drank anything. Lisa took him into emergency Saturday because he said he couldn't swallow. After 10 hours, they sent him home. He was worse Sunday, so Lisa took him in again. This time they kept him in emergency. They decided he was septic and put him on heavy doses of antibiotics. But his main complaint, the painful throat and stomach, wasn't addressed. They gave him antacids. But he said he couldn't swallow them. "Well, let them dissolve and swallow that!" "But I can't swallow! Not even my own spit!" "Well, then there's nothing we can do, is there!?" Finally, on Monday, they admitted him into the hospital. He was moved from the insanely chaotic emergency ward to another ward. He still hadn't seen a doctor to address his complaint that got him in here. However, there were no beds available on that ward, so this 6'3" young man was left on a stretcher and rolled into a treatment room on a physical therapy unit. Then the real fun began. For some reason, the nurses weren't listening to us. It was adversarial from the beginning. They couldn't seem to believe that he was really sick. They continually tried to give him antacids which he couldn't even swallow. Every time we saw a new nurse, we had to try to explain everything all over again and persuade her that Jesse was in pain and needed to see a doctor. "Well, we'll just have to wait. We can't promise he'll see one today." He never saw a doctor Monday. Jesse was still spitting into a cup. They kept trying to give him food. Antacids. They wouldn't let us stay with him. We had to fight with every nurse that came into the room. One time a friend of ours who is a nurse higher up in the hospital came to visit Jesse. The attending nurse came into the room. Our nurse friend asked the attending nurse a medical question concerning Jesse. Her condescending response was, "And you are...?" Our nurse friend took us out of the room and whispered to us, "You've been marked!" And we knew it. They wouldn't listen to the patient's main complaint. They wouldn't listen to his parents. We had to wrestle every little bit of care out of these people. Even Jesse was outraged in his ailing kind of way. And every little bit of care we got seemed to be administered begrudgingly and spitefully. Finally, on Tuesday afternoon, a general doctor came by to see Jesse. He apologized for not seeing Jesse the day before, but there were two "Haywards" on his list and when he saw one he crossed the other out. Then he tried to pull the same line on us, as if Jesse wasn't really in pain. Antacids, etc... Obviously, he listened to the nurses and formed an opinion before he saw the patient. Lisa finally got the nerve to talk to the doctor. She was livid. She said he hasn't had anything to drink or eat since Thursday. Something is seriously wrong with his esophagus! He had pizza Thursday night. Maybe something's stuck! All of a sudden the doctor's demeanor changed. "Oh! Maybe there is something stuck. We should order a scope immediately!" He said the specialist would be in soon to see him. We waited all day, fighting with nurses, for the specialist. Finally, when a new shift of nurses came on, I asked for pain relief for Jesse. She brought a couple of Tylenol pills. He cried, "But I can't swallow them!" She said, "But I was told you ate pizza today!" I lost it! I spoke my mind, but the nurse looked at me like I was speaking Vindaloo. She finally said, "Well, nothing's been ordered for pain, so there's nothing I can do!" Only doctors, whom he hadn't seen yet, can order drugs. Our frustration was at its peak. Jesse's pain, together with the frustration of not being respected and heard, reduced him to tears at times. Finally, late that night, after Lisa went to the nurse's station and had it out with the head nurse, she resentfully released the information that he was scheduled for a scope the next morning at 8a.m. We cheered! Jesse got his scope done and the endoscopic nurses were great. I got all teary when Jesse's prep nurse treated us with gentleness, kindness and sympathy. After Jesse's scope, the specialist told us that he had very severe inflammation all the way down into this stomach. He was put on more antibiotics and all kinds of stuff. He said it was mysterious and serious. He'd be in the hospital for several more days. It was comforting to hear Jesse's pain validated. While Jesse was being taken back to his room, he was fading in and out of consciousness from the drugs. He was singing the "JAWS" song. I asked him why he was singing that. He said, "Heading into dangerous waters!" But, miraculously, the demeanor of the nurses had changed. A doctor had validated his pain and said it was real. Therefore it was! The emotional environment transformed in an hour. Since then, Jesse slowly improves. The nurses have been great. Maybe in a day or two Jesse can come home. Stay tuned for a couple more posts later. One has to do with the principalities and powers embodied in institutions. The second one has to do with the incredulous, offensive, but incisive prize-winning novel, The White Tiger, by Aravind Adiga.