HOSPITAL / June 3rd: Tuesday morning Trisha and Mary stayed at the house to do some “rearranging.” They cleaned, folded and vacuumed and they had some ideas of where to put things so that my caregiving might be easier. They were worried that they were disrupting my method of doing things. Not to worry. I think almost everything is where they repositioned it except the pot holders which they logically moved to next to the stove. They folded all Kathy’s clothes and moved things around. Sometimes it takes a new set of eyes to come in and see differently. I definitely need that. As a designer and art director, I do that for a living, too.
That morning the nurse removed the NG tube from Kathy and turned off the oxygen for the first time. Karen, one of the chaplains, stopped by. Although Kathy and I are not name-brand religious, we felt very comfortable with her. She is studying to be an Unitarian minister so I felt right at home. Unitarians seem to be the most open and inviting. And they sponsor many of the best folk coffeehouses in New England, so I endorse that. Karen offered to take our photo with my cell phone and here it is.
I knew they would wait 24 hours before starting to feed Kathy through the tube which would have been lunch time. Numbers in the hospital can be a wishy-washy thing. When they say they will be in there in five or ten, they never say whether it will be five minutes or five hours. They kept giving her fluids, though. So the trial feeding didn’t begin until the evening. They brought up a bag of “food” that has everything in it: breakfast, lunch, dinner, dessert, vitamins and minerals and even some corn syrup to keep her from being too healthy. It seems pretty similar to Ensure or Boost but without any flavor. They started out very slow to see if she would have any problems. One of the issues with tube feeding is that there is still a risk of regurgitating food and aspirating it down into the lungs. So the head has to be elevated almost all the time. There are also different ways to tube feed. We will be doing continuous feeding for Kathy because there will be less chance of regurgitating a lot of food. But some people do night feedings. Another option is Bolus feeding which is like eating regular meals only the meal is injected or poured into the tube at meal times. They also started giving her her Huntington’s Disease medicines. She had been off meds for a week.