Home with "Bill"

We stayed in the hospital about a week, as I remember. Ken was in so much pain, but he would NOT let me ask the nurses to give him any pain medication. His ideas about pain meds would be a constant source of struggle for us over the two years of his illness. Because he had seen a close family member over-medicate herself for most of his life and "act batty" (Ken’s description) because of the meds, he refused to take his medications like he should. The doctors all told him that he would not become addicted as long as he took the meds as directed, but he just did not believe it. His refusal to take his meds really made the entire two years harder on both of us than it had to be, but that was what he believed and there was no shaking it loose.

When we got home, all of the medical supplies were there. I tucked him in the hospital bed–he was so exhausted and in such pain–broke my heart. Then I set about the task of figuring out the feeding pump and all that it entailed.
As I have said previously, the pump they brought to our home was different from the hospital pump, so the instructions they gave me in the hospital weren’t a lot of help. So, for the first week, it was pretty much trial and error (mostly error). There are several things I learned that first week that I believe should be in ALL CAPS, BOLD TYPE on the feeding pump instructions.

1. You should let the liquid gravity feed down the length of the tubing BEFORE you thread the tubing into the pump. If you don’t, the pump will push all the air in the tube into the patient's intestines and cause great pain. (Wouldn’t you think someone should have mentioned a thing like that?!)

2. As long as you are in a climate-controlled house, it is okay to pour more than one can at a time into the bag. You DO NOT have to watch the bag constantly and pour the new can in as the old one runs out. (This I discovered after two sleepless nights,watching the bag all night.)

3. NEVER, NEVER, NEVER let a bag run out of liquid if you are not through with the feeding. If air gets into the tubing, you have to start over with a whole new bag/tube set.

They had Ken on four cans a day of Replete (made by the same company that makes Nestle’s Quick) which is basically Ensure on steroids. At first it would take all day into the night, because we had to drip it very slowly until his system got used to it. Over time, we were able to increase the rate enough to only have to do it at night. I’ve told people that the pump was kind of like having a baby in the house. As long as it was full and not tangled up in the covers, it slept through the night. If the liquid ran out or the tubing got tangled, or Ken laid on top of it, that thing would scream at you until you got up to look after it. Michaelann, our sweet niece, decided that if the feeding pump was going to be a part of our daily lives, it should have a name. So, she christened it "Bill". We loved Bill. . . he helped keep Ken alive for a little over two years.