We have had hospice now for a week. We are still in the process of getting Cal comfortable. It is very frustrating, but I know it isn't there fault. I was just expecting to get hospice and him be comfortable instantly...wrong! It is a process.
It started last Thursday night. A nurse came to our house about 8:30 p.m. to bring Ativan. This was supposed to help him relax and sleep, but instead, he was up all night screaming. Cal reacted the opposite of what they expected. He cried until the next day when the nurse came back out with morphine. The morphine worked at first, but over the next 24 hours, it didn't take care of his pain like the first dose. So, Friday and Saturday night, they suggested that we have continuous care which means a nurse stayed over night with us. We seemed to be making some progress and told the nurse on Saturday that we were good and didn't need a nurse for Sunday night. However, that was not the case once the nurse left. The next few days were difficult. Cal cried often and was very uncomfortable still. We adjusted his morphine dose and frequency of the dose and still didn't get relief. So, yesterday they suggested that we change medicine once again because the morphine didn't seem to be controlling his pain. During the process of changing medicine, however, they suggested that we stay in the hospice unit at Baylor All Saints Medical Center in downtown Fort Worth. They wanted us to be under doctor care because of how he reacted to the Ativan. So, we drove up there last night and expected to stay through the weekend until we got his medicine right. Unfortunately, the hospice unit was not what we expected. It was very disappointing, and the care for Cal was below average. With that being said, I told the nurse at 10:30 last night that we wanted to come home and continue the care at home. They were not doing anything for him that we couldn't do at home. We were discharged at 12:30 and got home about 1:15 this morning. Our primary nurse is on her way out here to bring us the new medication and discuss where to go from here. I guess we will try the new medicine for a couple of days and pray that it works for Cal. It is used for nerve pain, and with his disease being neurological, the doctors feel like this medicine will work. I sure hope so because Cal needs relief.
We appreciate the cards, calls, and texts, and everyone's continued love, support and prayers.