My Horrible Summer - Part 2

I went into the hospital for my surgery on Monday, July 3. I did not have my surgery on that date, however. The doctor stopped by to see me later that evening and told me that they were going to try to get me into the operating room on Tuesday, July 4th. Unfortunately, there were a couple of major accidents that day that tied up the operating rooms (5 major surgeries) for the entire day. Dr. Perez said we would try for Wednesday. I called Mom to tell her what he said, and early on Wednesday afternoon, Mom showed up with my sister, Karen. Karen works for a doctor so she asked questions and told me exactly what had happened to me two weeks earlier. It seems that the acute pancreatitis could have killed me if I hadn't gotten treatment so quickly. Mom, Karen and I watched the Cubs game on television. The nurses were checking in with us every few hours. Finally, at 7:30pm, the chief surgical resident, Eric Woo, came into my room to tell me that if I had the surgery on Wednesday, it would be close to midnight. He felt we should just go ahead and do it on Thursday, so I sent Mom and Karen home. The doctor ordered a heavy duty sedative for me so that I could get some rest.

The next morning started with a bout of vomiting and pain. I was only allowed ice chips in preparation for the surgery. I asked when it would be, because I promised Mom that I would call her before I went in so that she could come to be with me when I came out of the surgery. No one knew the answer. I talked to Mom about four times during the day. Then suddenly, at about 7:30, the orderlies showed up to take me to surgery. I told them that I had to call my family, and one of the nurses said that she would do it. I showed her the phone number and asked her to call for me. Then off to surgery I went. I was brought back to my room at about 11:30 with an IV in my neck (all of my other veins had been blown by the nurses and aides drawing blood over the previous three days). I asked if my mom had been called, but the night nurse didn't know. What I didn't realize was that I had been put in a different room (my second in three days). When I woke up on Friday morning, I thought it was odd that Mom hadn't called to check on me. Finally, about 11 am, the phone rang, and there was Mom crying. I asked her what was wrong. She told me that she thought I had died because she had been calling my room for hours and hours and couldn't get anyone to answer. She finally got the main phone number for the hospital and got through to the surgical floor nursing station. That's when they told her that I had gone to surgery the night before and been put into a different room. Mom was frantic trying to find me.

I was furious (even if I was still groggy from the anesthetic). I called for the nursing supervisor, who showed up two hours later. I told her that I had been promised by the nurse that she would call my mother to let her know that I had gone into surgery, but that not only had the nurse not called her, no one had bothered to answer the phone in my old room to tell Mom that I had been moved. I told them that my mother had cancer and was not in good health, and what they had put her through did not help. The supervisor apologized for any stress, but said that it wasn't the hospital's policy to call relatives. I yelled at her that I would have called myself, but the nurse and the orderlies wouldn't let me have five minutes to do it. I had been in that hospital for three and a half days waiting for surgery, and the f***ing staff wouldn't let me have five minutes to make a call to my family. By the time I finished my tirade, the nursing supervisor was much more apologetic and had changed her tone. I think I even threatened a law suit for emotional abuse.

The nurse who was assigned to me that afternoon was a sweetheart. She asked me what I did to scare the nursing supervisor. I told her about what had happened the night before and the supervisor's attitude when she had finally showed up to talk to me. The nurse laughed and said, "good for you. Some of these people around here forget that we're here to help the patients, and they don't treat them very well." I agreed with her. She became my favorite helper during the rest of the ordeal that I went through. You see, because of the pancreatitis, I had developed a life-threatening infection in my blood. I was on antibiotics for almost three months to get rid of it. I spent the first 16 days of that time at St. James, during which time there were no less than four doctors taking care of me. I had test after test to try and figure out just exactly what was ailing me. All the time, I kept throwing up or having diarrhea. My blood sugar went crazy because I wasn't taking my medication. The doctors ordered insulin boosters, which, once I started taking my glucouphage again, caused me to crash in the middle of the night a couple of times. One night about 2am, I rang for the aide to help me get to the commode next to my bed (all of my IV tubes were tangled up) and I asked her when my blood sugar was going to be taken again. She asked me why, was I feeling funny. I said yes, I'm not feeling too great, so she went to get the meter and tested my blood sugar. It was 64 (normal is 100+) and she went running out of the room. She was back in a flash with two cartons of orange juice, and told me to drink both of them.

A couple of nights later, the same thing happened. I was given an insulin booster at about 9pm (after the last blood sugar test for the day), and I woke up around 1:30am, again feeling really weird. I rang for the aide and asked her to test my blood sugar. I told her that I thought I was crashing, and sure enough, the blood sugar level was only 78. She got me some apple juice and I felt better. The next night, the nurse came in after the blood test and said that she had to give me an insulin booster. I asked her if I really had to have it. She told me that it was my right to refuse any medication that I wanted to. As far as she and the other nurses were concerned, they thought the doctor's orders for insulin if my blood sugar was over 140 was not right. Normally, they would not give an insulin booster to someone unless their blood sugar was over 180. So I refused the insulin, and slept through the entire night without a problem. After that, if my blood sugar was below 160, I refused the insulin. The nurses were with me. I was taking my other medicine and that was doing the job. No more insulin.

On top of the problems with crashing, the insulin was also causing me to retain fluid and my legs swelled up very badly. My skin was so stretched that water started seeping from the cells. I had a towel under my feet to catch the drips. My feet were freezing because they were wet and the room was air-conditioned. It was so cold in my room because it was so hot outside (the temperature during my stay in the hospital had been in the 90's for almost two weeks). One of the med students who looked in on my every day told her internal medicine supervisor about my swollen legs. He came in and asked if anything was being done for them. I said, no, and I had told the nurses that when my legs started swelling, I was taking 20mg of furosemide to get rid of the fluid, but I wasn't getting any in the hospital. He said, I'll take care of that and ordered an immediate injection of 40mg of lasix to start the process. After that I would get a 20mg tablet each day. Of course, that meant that I had to start running to the bathroom a lot, but at least something was being done.

Speaking of my room, by day ten, I was in my fifth different room. I kept having to call Mom and tell her the new room number and extension. The problem was that all of the rooms were two beds and most of the patients were women, so when two guys came through emergency surgery, they needed a room for them, so they kept moving the women around in order to free up a room. I ended up with several new roommates during my stay, once I was finally settled in my last room. One was only there for one night (she was the nicest). There was one old lady who had had hip surgery that came in on Saturday evening. She was in my room for two and a half days. The old woman's daughters (one was a nurse) kept trying to bully her into doing what the doctor wanted. She refused to do therapy so that she could be moved to rehab and had been making every roommate that she'd had miserable. They put her into a machine that moves the leg and hip joint, but she kept undoing the straps and getting out of it because it was uncomfortable. Of course, that meant that she was screwing up the surgery and causing herself a lot of pain, so she was constantly ringing for the nurse to get painkillers. The problem was that she was not letting them take effect before she'd start yelling for the nurse again. On Sunday night, I was trying to sleep and this old woman just kept screaming. I pleaded with the nurse to please, please give her a sedative to put her out so that I could get some sleep. By the time the morning shift came on duty, I had a serious migraine and was close to screaming at the old bitch to shut up. The nurses finally got her out of the room to therapy, then they gave me a heavy duty painkiller and closed up the area around my bed so that I could get some sleep. They also had some words with the woman's daughter. Luckily, she was moved to the rehab facility that afternoon and I didn't have to put up with her any more.

By that time, I had been in the hospital for two weeks, and I wanted to go home. They had put a PICC line into my right arm because I no longer had any viable veins to use for my IVs. My body was covered in bruises from all of the blood draws and IVs. My right hand had swollen to double its normal size because of an IV that blew out and a nurse who didn't believe me when I told her that. She just wiggled it around, causing me mucho pain, and said it was fine. The problem was that the needle had slipped out of the vein and the IV fluid was simply going into the tissue of my fingers and hand. My fingers were nearly purple when the night nurse came on and I showed her. She ran to get a doctor. The took out the offending IV and ordered alternating ice packs and heat pads. The doctor told me to keep the hand as elevated as possible to promote the release of the excess fluid. My fingers looked like purple sausages and I was afraid that I was going to lose the use of my right hand. After one of her visits, my sister, Karen, told my other sisters that they needed to get me out of that hospital before it killed me. I agreed with her.

I was finally able to find out exactly what was going on that Monday after I woke up from my much needed nap. A new intern came in, Christina, and introduced herself. She asked me what was going on with me, and I told her that I didn't really know. There was a constant stream of doctors in to examine me, but they never told me anything. They just seemed to be writing conflicting orders in my chart at the nurses station. I told her about the so-called infection and that I didn't know why I couldn't go home since the surgery scars were healing nicely. I also wanted the PICC line out of my arm. She promised to look at my chart and come back later to discuss it with me. She returned about four hours later and that is when I finally found out just how deadly the infection in my blood was. Christina also told me that I would have to keep having IV antibiotics for a couple of months after I left the hospital. I called Mom and told her what Christina had said. Mom said, come home and we'll take care of it. So I called for one of my doctors and said that I was leaving the hospital on Wednesday and that they had better get busy and make it happen. He didn't want me to leave. I pulled back the blanket and showed him my feet and held up my right hand, and I said that if he and the hospital didn't want a multi-million dollar lawsuit for what they had done to me, he'd better make sure that I was allowed to go home within the next couple of days with the necessary in-home care - or else.

Suddenly, there were people from the patient services department coming in and out and making the arrangements that I wanted. I told them where I was going to be for my recovery and which home nursing organization they should call. For people who are supposed to take care of patient needs, these folks didn't have a clue if the patient was going to be outside of their immediate circle for recovery purposes. Finally, everything was in place. Mom came to the hospital on Wednesday afternoon with Diana and Ken (bless them for being such caring people), and I was finally discharged. Kenny pulled the car up to the front door and I got out of the wheelchair into the front seat. I hooked up my seat belt, Mom and Diana got into the back seat, and we pulled away from the hospital. I burst into tears. Ken asked if he should take me back. I said, no, I'm crying because I thought I'd never get out of that place alive. I got myself under control and we headed home. I was so weak, I didn't believe it. When we got to Kankakee, we stopped to drop off my prescriptions at the Walgreens, then Ken and Diana took me to Mom's and went on home. That's when I really lost it. Mom understood and just held me. I had been so scared that those people were going to kill me with all of their conflicting orders. I really was very happy to be out of that hospital. Mom made me go lay down on the bed while she ran back into Kankakee to pick up my drugs. I went to bed at 8 o'clock that night and it was the best sleep I had had in over a month. After that my healing really began.

The following morning, Mom went to get her hair done and to get her allergy shots with my sister, Janis. I let the guy from the home health care in. He was bringing all of the supplies that I would need to give myself my IV antibiotics. Mom got home around 12:30 and the visiting nurse showed up right after that. She was a wonderful young woman and helped Mom and I set up my first IVs. She stayed with us all afternoon while the IVs were dripping. She had her computer with her and took all of my information. Mom and I were a little nervous, but the nurse was very good at showing us everything that we had to do. Mom wrote it all down, step by step. Later that afternoon, my cousins from New York arrived for a visit. Judy, who is an inhalation therapist, looked through all of the stuff that I was taking. She checked me out thoroughly and said, what did that hospital do to you? I told her the story of my last two weeks and she was horrified. She said that you had to have someone there looking out for you or the hospitals would take advantage. She told about what she had to do when her brother, John, had his heart attack. She fought with the hospital personnel in order to get John the necessary treatment. His doctor told him that if Judy hadn't insisted on the one test that the hospital didn't want to do, John probably would have died. Anyway, Judy was telling my sisters and my Mom what I should be getting and what support I was going to need. I excused myself at around 8:30 and went to bed. It was so nice having all of those people looking after me. My healing was really happening. More later.