How I spent my Christmas holidays

     12/21/2010 I’m writing this from the Family Surgical Waiting Room at Baystate Medical Center in Springfield, MA. Where to begin? Margaret is having a chunk removed from her colon this morning. Ideally, the surgery will be done completely laproscopically so her recovery time will be of a relatively short duration. I’ve been having flashbacks to my own surgeries; in March, my colon sprang a leak and I had to have an emergency colostomy. In June, my surgeon reconnected the severed ends of my colon, restoring me to normal digestive functioning. My surgeon couldn’t do everything in a single surgery because I had a nasty infection raging in my abdomen as a result of the leaking colon (there’s nothing like feces to cause an infection), like a sewer break next to a water main. The sewage had to be cleaned up and the colon allowed to heal before it could be reconnected; the surgeon told me that if she had just sewed it back together at the time of the first surgery, it would have continued to shred and leak and the infection might have killed me. Margaret doesn’t have the infection issue so her colon can immediately be sewn together after the polypy chunk is cut out.
     I learned why they almost always take out at least six inches of colon for this type of surgery, instead of just removing he bit with the polyp; she will cut (and remove) the blood vessel that feeds that part of the colon; the vessel feeds about six inches of colon. If they left some of the colon with no blood vessel to feed it, that chunk of colon would die and rot (infection!), so they take out everything that is feed by the vessel that is removed.
     I picked Margaret up yesterday at 4:30 PM at her pulmonologist’s office in Greenfield. We drove down to Springfield and tried to check her into the hospital. Some patients check in the night before surgery for what they call “hotel,” because it is more convenient than arriving at 6 AM. Margaret wasn’t a hotel patient; she is paralyzed on her left side and is diabetic and needed help to do the colon cleansing necessary for today’s surgery. The surgical patient rooms in this hospital date from the 1960s. They are double rooms, with tiny closets and small bathrooms. Need I say that the bathrooms are in no way handicapped accessible? Margaret couldn’t get into the bathroom in the room; the wheelchair wouldn’t go through the door. Even the “accessible” bathroom on the floor wasn’t of any use as the toilet was mounted close to a corner, with grab rails only on the left side. Margaret is paralyzed on her left. Finally, she has rheumatoid arthritis and cannot rise from a low seat. None of the toilets, not even the one in the “accessible” bathroom, had a high enough seat for her to use. The staff offered her a commode but unless one is bolted to the floor, commodes are extremely tippy to one-armed pressure. She fell while using a commode shortly after her stroke, some twenty-odd years ago, and was told to never use one. There is a company that makes a giant plastic spacer that snaps on top of the toilet and is a cheap, temporary way to raise a toilet seat but the hospital doesn’t own any.
     The Americans with Disabilities Act was voted into existence by Congress in 1990. It clearly states that medical facilities cannot deny essential services, especially when architectural barriers can easily be overcome with “readily achievable” methods. To my mind, the use of a toilet for someone who can use it is an essential service and requiring her to use a bedpan is a violation of the ADA. How a hospital can get away with such a gross violation I just cannot understand. I hope Margaret kicks up a tremendous fuss. And I think I will, too, as a preemptive strike.
     I was very annoyed that the nursing staff didn’t begin her colon cleansing until almost 1 AM. It wasn't entirely their fault; the pharmacy didn't deliver the "Go Lytely" on time, but the staff didn't call for it again (after the initial order at 6 PM) until I made them, around midnight. The surgeon’s instructions were to start the procedure by 6 PM and both Margaret and I were very worried that the surgery might be canceled in the absence of a proper clean-out. I really irritated the nurse by crying out, "Hurray!" when the runner finally came down the hall with the gallon jug as I was preparing to leave. I had stayed to help Margaret; the cleanse is a thoroughly unpleasant procedure, made worse by her needing to use a bedpan. The nurse was quite snippy about the fact that she had been nice enough to allow me to stay late, against hospital policy; she thought  I was being sarcastic. I wasn't; I was genuinely happy, even thrilled, that Margaret was finally going to start the clean-out that was the entire reason for our presence that night. She really scolded me, upsetting Margaret. I had to leave since I knew today was going to be a long day. Since she started so late, poor Margaret was still having cramps when I arrived back at 6 AM; she was about to be transported down for pre-op and was still on the bedpan! She finally went into surgery between 7:30 and 8 AM and I came here.
     This is a very nice room, with plenty of comfortable chairs, a TV, magazines, a basket of romance novels, and a couple of tables but you are not allowed to eat in here. The cafeteria is next door, however.
     I’m tired.
     Update on January 6, 2011 – Margaret’s surgery went very well; everything went as planned and she was released five days later in the midst of last-minute preparations for a monster snowstorm (the one that left New York City paralyzed). I drove her home and she has resumed her normal life. I even got home just as the first of the snow was sticking on the road. I hate driving in the snow as my car handles like an ice skate and I’m not a skater. Seriously, my car is horrid in snow. My last car was an all-wheel drive and I got spoiled by its ability to maneuver.
     We didn’t kick up the fuss about the lack of a proper toilet in the hospital; in retrospect, we should have, but I was too busy trying to help distract Margaret and solving more immediate problems. Since she wasn’t allowed solids for days after the surgery, she just tolerated a bedpan. I don’t need to tell her story, though. I’m happy to no longer need to give her those horrible injections; the doctor stopped them. I got stressed every time I had to give one because I always wondered if this was going to be the time when I really hurt her. But, for anyone who needs to do this for someone else, I think this is the secret - don’t ever think of it as “no big deal.” If you take it seriously every time, it won’t BE a big deal, but if you don’t, you’ll hurt them.
     That’s the story. In retrospect, it went entirely by the book, but you never know what’s going to happen. Margaret got really scared in pre-op because the surgeon came in and told her all of the bad things that might happen (she had to – that’s the law) but none did. And we were all amused that the surgeon had to sign Margaret’s belly. She told us that she had to autograph the part that she was going to operate on except for anal surgeries! We all laughed and it broke the tension raised by the possible bad outcomes. Margaret’s biggest fear, I think, was ending up on a ventilator, but her lungs behaved. I promised her that I wouldn’t let that happen (I’m her medical proxy and we talked about that at length when we filled out the paperwork). It was good to do all of the planning; Margaret is good at anticipating things whereas my attitude is, “Life’s what happens when you make plans.”