All rights reserved. For information address Ten Penny Players, Inc. www.tenpennyplayers.org When we went back to hand clinic they had looked at his hand and decided he was ready for the next procedure. They were going to do a release on his left hand so that his forefinger and middle finger would be free. That only left the pinky on each hand to be separated from the fin- ger next to it. I was beginning to feel at the end of a long tunneling expedition. Only two more fingers. The main thrust was to get him past the pedi- atrics’ examination and into the hospital. We planned to take him out of school several days in advance to guard against a cold. Our pediatrician had given us an antibiotic to administer four days prior to admission. It all went according to sched- ule. He was pulled out of school and started dos- ing up . . . antibiotic and decongestant. He was annoyed at having to spend so much time at home. His whole routine was fragmented. I was all keyed up. I was right in the middle of a children’s the- ater production. We’d been having an unbeliev- able amount of administrative and production trouble. Barbrah and I were tired and harassed endlessly with the play and I was desperately worried that Athelantis wouldn’t be admitted for the next operation. The antibiotic worked. His temperature only went up to 100.2 while he was being examined. His ears turned a brighter red, but not enough to get him sent home. The pediatrician at the hospi- tal hedged and said, “Don’t blame me if they send him home.” I assured him I wouldn’t. I was so happy that we were in. We took him to the orthopedic floor. The nurses weren’t expecting him. Nobody had told them that Athelantis was going to be admitted. One of the nurses called housekeeping to order a crib. They hung up on her. It took nearly three hours for the crib to be brought down. It was Saturday and we stayed all day and evening. the floor resident never showed to give him the admittance examination. There were few nurses on duty. They seemed delighted to have all the parents hanging around. During his whole stay we were never hassled about our arrival time. Half the nursing staff had quit. The parents were needed. Athelantis strode about the floor. King baby. He was angry when we left. He turned away, wouldn’t kiss us good-bye, and he stalked down the hall. The next morning he came running down the hall to greet me. It was a long, boring Sunday. It was very hot on the floor. It became very hard to stay awake. Going down to the coffee machine on the first floor was the only reviving agent. Not the coffee itself, just the walk to the machine. The anesthetist never arrived to introduce him- self. The surgeon’s apprentice came though. I had written on the permission-to-operate form— no groin graft. He asked permission to use his discretion. I asked why. He said that they often did a groin graft instead of a thigh graft. I reminded him of what happened the last time they had been similarly inspired. He wanted to use his discretion anyway. I said no, there was plenty of thigh left. He was very charming as the youngish doctor, but no groin graft. He left. We left. They operated the next day. Athelantis was the second child up. Both he and the first child were there for hand surgery. The little girl was a private patient of the surgeon who was supervis- ing our operation. When I arrived at the hospital with Barbrah we went right up without announc- ing ourselves. The little girl was already awake and in a stroller. Athelantis came down at 5:30 P.M. He had gone up at 9:45 A.M. He was calm and clinging to the blanket that they’d remem- bered to send up to the operating area. His arm was in a cast. I had requested one because he’s rough and I knew that a bandage would no longer protect him. The doctor arrived. They had taken a thigh graft and performed the operation we had expect- ed. I asked how long Athelantis would have to remain in the hospital. He said only a few days, that they’d release him before changing the band- ages. They’d operated on Monday; he could go home Friday or Saturday. They wanted to watch the patching area and make sure that it was healing properly before releasing him. I asked when the next operation would be performed. He said in about two months. I asked if that would be the schedule, every two months, until finished. He said yes, barring respiratory illnesses. I asked, will that be it, just the two separations? He said maybe. It depended upon Athelantis’s growth. They might want to do some tendon transplants if they saw his hands weren’t functioning properly. He said that as long as Athelantis was still in the city and available for surgery they would consider continued opera- tions. That was really eye-popping. As long as Athelantis was available they’d continue to oper- ate. I understood that they couldn’t give me defi- nite plans because things might change as he got older. The bones might start to curve; the mus- cles might not be strong enough. But these things would be determined by need, it seemed to me, the need of Athelantis to use his hands bet- ter. If they’re functioning well, that’s it, no more operations. If they’re not, then we discuss what to do, but to continue to operate just because he’s there, “available,” is bizarre. We fed Athelantis some consommé, a little apple juice, with some jello. He threw up twice. So did the little girl. Neither had ever had that reaction after anesthesia. I asked the head nurse for more information. Had they changed the anesthesia, had they been given too much, was the anesthetist experienced or interning? She said, yes that was all possible, but never did get the correct answer for me. The next day Athelantis was very cranky. He sat on my lap for hours and crabbed. When the head surgeon arrived on the floor to see the little girl I captured him for a minute. I wanted an explanation of the projected procedures. He told me that it would take four operations, not two, to separate the last two fingers. He said that the bone had to be separated by inserting a plastic substance between the two sections first. They would then wait for a webbing to form and then they would split the fingers. Four operations. I had been primed for two. The younger doctor had allowed me to think that there were only two more. I felt incredibly dimmed. I had thought that it would be over by May. We had told Athelantis that there would only be two more operations. He was at an age where he understood those things. Before he had gone into the hospital I had told him what they intended to do to his fingers. When someone mentioned the expedition to him he would hold up his hands for people to inspect. My paranoia was unleashed. I called my friend and asked the name of the hand surgeon from her hospital. As soon as Athelantis was sprung and removed from the cast we would get a consulting opinion. Ernie and I decided that if the other hospital agreed we would let him stay at our hospital (at least until the book came out). If they offered another course of treatment, a shorter one that sounded feasible and realistic, we would consider transferring. We would also have to consider getting a bank loan to pay surgeon’s fees. If we were going to switch hospitals the prospect of paying a bank loan seemed infinitely more attractive to me than being forced into another clinic. I can cope with bank payments. You know what to expect from the bank and they know what to expect from you. It’s beautiful, clean, clear, and finite. I never know what to expect from the hospital. Each time we go in I think—aha, everything awful has already happened to us, this time it’s going to be a snap. Each time something new happens. There’s no room for complacency when you’re dealing with the clinic. Athelantis stopped talking at the hospital. he also stopped eating. He didn’t speak to me for five days. He would only eat the fresh fruit I brought him, sometimes take a little cheese, and drink his milk. That was after he broke a total fast. The nurses were concerned. They ordered cottage cheese and yogurt for every meal. He wouldn’t eat their food. He wouldn’t talk. The day before he was finally released he began speaking again . . . and eating cookies and donuts. He would go into the nurses’ own room and grub from them. When we brought him home he headed right for the refrigerator. He ate and ate and ate the entire weekend. He also began talking properly. Two of his teachers came to visit him and brought him pictures and get-well cards the other children had made for him. I returned him to school on Monday.
I’ve finally adjusted to the possibility of four
operations. I’m also prepared to switch hospitals and plunge into debt. The biggest adjustment that I’ve had to make and continue to force myself to consciously verbalize is that when dealing with the hospital you’re talking of survival. You’re not talking about health or care or abstract philoso- phy of treatment. We are talking about rights and the purchase of services. When you go to a department store and pay for a product you expect a certain level of quality or you return the product and complain. When you hire an accountant or a plumber or a locksmith you demand a high level of competence or you com- plain. The doctor, the hospital, must be treated in the same manner. I pay seventeen dollars a visit to outpatient; Blue Cross is paying eighty-six dollars a day for room and board plus all the other items, like equipment, medicines, and rentals, on your bill. The foundations and the government are helping to support the hospital. The public is supporting the whole medical struc- ture. We are purchasing services and have the right to complain when the level of services is too low. It requires too much energy to constantly con- front the hospital system. But there’s no alterna- tive. Athelantis is very aggressive about express- ing his ire. I’ve become rude and nasty and no longer feel guilty about putting staff members in their place. I don’t like the role they’ve chosen to play and refuse to be docketed in the role they’ve chosen for me. We’ll continue until Athelantis is free. However, it will take something really drastic to make me put Athelantis back into a hospital. Ernie and I don’t want to think about accidents either to Athelantis or ourselves. To fight for my child is dreadful, but I’ve been healthy through it. If something happens to Ernie and me and we have to hospitalized (especially after this book) who’s going to fight for us? Everybody hates a big mouth. Who’s going to fight for me?