HOSPITAL / May 29th & 30th: Thursday afternoon Kathy’s sister Trisha arrived from New Mexico. She rented a car and drove up from Bradley Airport. She called on her cell phone to warn me she was on the same floor as Kathy’s room. Very courteous to warn me. She didn’t want to just barge in. I welcomed the company and help working through hard decisions.
Kathy’s roommate for the first few days was a woman named Olga. Like other patients on the floor, I only know what I think I know. Olga was Jamaican and would hum some hymns to herself from time to time when she was happy. From what I could tell, she was diabetic and her legs had been amputated. But I’m not sure exactly why she was in. She was a lovely “character” as they say. The nurses loved her craziness even though she was not cooperative. She didn’t want anyone changing her dressings, or checking her glucose levels. She would scream “Murder!” when they tried to draw blood. She could wiggle around the bed so she was practically upside down.
She asked me once, “Sir, could you do me a favor?”
“What can I do Olga?”
“Would you have a knife I could borrow?”
Why do you need a knife, Olga?”
She pointed to her IVs in her wrist, “I need to cut these off.” and shrugged her shoulders with a smile.
Olga had no visitors and only one phone call while I was there. Sometimes she would play with the bedside phone and talk to imaginary friends and family. When other phones and buzzers went off nearby she would answer the phone, “Maureen?” They moved her back to her nursing home when I was away from the room.
That night Kathy had some serious episodes of labored breathing. The secretions in her lungs were building up. They used a deep suction gizmo to remove as much junk as they could. Eventually Kathy fell asleep and Trisha and I went back to the house to rest up. Marty was excited to see us and very chatty when we got in. Trisha and I talked for a while about Kathy: what to do and how far to go with resuscitation efforts. I thought I knew what I wanted and what Kathy wanted but every situation is different.
Friday morning we got to the hospital and Kathy was all cleaned up and seemed pretty content. It turned out that her IV had come out during the night and they had a lot of trouble finding a suitable vein. They said she was a ‘tricky stick’, but eventually it was fine. Her virtual breakfast was sitting there waiting to not be eaten. We had thought she wasn’t to take anything by mouth for now. I found Dr. Irani and he confirmed that he did not recommend anything by mouth.
So it was another day without food. She was definitely hungry. When they brought in her lunch she tried to ask “Is that my food??” I had to tell her she couldn’t eat yet. She was not getting any of her Huntington’s or blood pressure medicines either. Just IV fluids, antibiotics and lots of oxygen. I didn’t want to tell her she may never eat food again.
Respiratory therapy came in and worked her over. They tap on her side with a cupped hand to try to break up the mucus in her lungs. They tried to get her to do some of her breathing exercises but she just couldn’t do much with them. Dr. Irani came by and gave us an update and we talked more about the feeding tube and we confirmed that we wanted it done. He said it would have to wait until Monday. Later that afternoon Kathy had another bad breathing episode. I tried to use the suction machine to pull some of the mucus out of her mouth but the nurse had to come in and use a different type of catheter tube to go deeper into her throat.
Later she was breathing a little better but the doctor wanted to put in a nasogastric (NG) tube so that she could get some nutrition during the weekend. Dr. Irani and the nurse attempted six times to feed a small tube up her nose; down her throat; into her esophagus; and on to the stomach (I think). Well it didn’t matter. They tried different sizes. Kathy couldn’t help them by “swallowing” the tubing. It kept coiling up in her mouth instead of continuing on to her tummy. They gave up and did emergency deep suction to clear out the mucus junk. It was very traumatic for Kathy and I could tell she was afraid.
By 8pm they had moved Kathy to a different part of the hospital in the Wesson Building called InterCare. InterCare is a higher level of care that is like intensive care light. Generally they have one nurse to two patients with full monitors. The monitors give you something to look at but they can give you paranoia especially with a Huntington’s patient. All those electrodes are really designed to be on somebody fairly still. So with Kathy’s hand and arm movements we were told to ignore her respiratory rate if it started jumping around. And even her heart and Oxygen saturation rates were getting thrown off. When she was asleep everything worked fine because her movements stopped. She had a good night of sleep. So did we.