I have been extremely lax in posting, but I find it difficult to get away for as long as it takes to write something thoughtful and profound. Or at least something thoughtful. Or at least something. I am stealing a few moments here to write a quick update on the latest happenings in Agnes’ saga.
Jeremy and I passed all our training challenges and did a 24-hour shift of care at the hospital. That went very well, and I’m glad we did it because now if one of Agnes’ home care nurses doesn’t show up, we have some experience with what happens over the course of 24 hours. Agnes is really easy at night, and it is nice to know that going into a no-nurse emergency, because then all we really have to worry about is how do we stay awake.
Anyway, Agnes came home in an ambulance on Wednesday afternoon. A transport team took her from her room and rode with her home, and I rode in the front of the ambulance. An employee from the equipment company and the case manager from the home care agency both met Agnes at home. We all got her settled and hooked up to her home machines. She did settle in very well. She didn’t throw up during the first couple days at home like all the other homecomings. She didn’t take a sudden turn for the worse within the first few days like all those other times. Her respiration still seems fine. Her nutrition still seems fine. Her belly is still distended, but we are measuring it every day and so far there is nothing alarming. Agnes is sleeping a lot yesterday and today, but when she is awake she seems content. She likes to watch Stephen play. She likes to look at the dog and the cats. If a cat jumps up on my lap while I hold Agnes, she is very interested in that. She doesn’t really like to touch the fur, but she likes to watch them. Another nice thing is Agnes has no doctors appointments soon after discharge. I think her first appointment out of the home is on Dec 23rd. She does have some people coming to the house to visit her, but I am happy I don’t have to drive her back to the hospital campus over and over within the first week of being home. That feels like a real luxury.
We have twelve hours of home nursing now, from 7pm to 7am most nights, and 6pm to 6am on Saturdays. So far I have not been able to take advantage of an earlier bedtime; I learned to stay up late when we were getting 11pm to 7am nurses, and I can’t kick the habit! We are trying to settle in to a new routine that doesn’t involve going to the hospital. Also, I know Christmas is in a week and a half, but we have done nothing to get ready yet! No gift shopping, no baking, no dinner planning! I don’t know how we’ll get it done, but we will.
Our biggest prayer right now is that Agnes stays well enough to be home for Christmas. That would be so special, and her first holiday at home.