Sunday, August 16, 2009

Good days all in a row

This is now the third day in a row that I've been feeling really strong. On Thursday, every time I had to move anywhere I felt really knocked out, which is always scary and gets me thinking that I'm not going to regain my strength, so it's always reassuring when I bounce back from a bad period. I've been reluctant to test my strength, for example by going out, because I want to conserve all of my energy for Thursday, which I'm sure will be exhausting (although exhilarating).

Donna is here again for the weekend; she and Marty have been working together on getting a number of systems set up, such as checklists for my PCAs and a PCA logbook, as well as continuing to work on party stuff (this gathering will have the most extensively doublechecked and proofread set of name tags in history!). Friday night we ordered pizza, and last night we got takeout Chinese food (after I thought about the possibility of going out to eat).

When we had the big meeting with all the hospice staff and PCAs two weeks ago, one idea that came up was that I should be on daily home vital signs monitoring, so about a week ago one of the hospice nurses, Maureen, came with the equipment and taught Julie and me how to use it (Marty was out, so I showed him the procedures later). There is now a monitor that has been placed near my bed, with a digital readout that shows the time and date, and which goes on every day at ten thirty and announces, "It's time to check your vital signs." Then, following voice prompts, I have to put on the blood pressure cuff and the finger oxygen sensor, and someone has to push the start button (it's too far for me to reach). I can see the readout, and the machine transmits it over a phone line directly to Maureen's computer. The first two days she called me immediately after because she noticed some of the readings were high, but I explained on the first day that I had been having trouble getting the blood pressure cuff in place, and on the second that I had stood up to get the cuff right before taking the reading, both of which had raised my heart rate. Now I've been careful to get the stuff in place at least ten minutes before, to give my heart time to settle down. Because this reading is taken at ten thirty (a time I chose), and I need to have my meds and nebulizer treatment finished at least one hour earlier, this has imposed a time schedule on our mornings which we've had to rush a little to reach, since I have to eat before taking Celebrex. I suppose if we continue to feel rushed I can get the time changed, but it is good to have everything done by ten thirty, so I'd like to keep it as it is if it isn't too much of a burden for Marty (there was one night, I think Thursday, when he didn't get to sleep till after three, and I hated to wake him).

This morning we both slept late; after waking up some time after seven Marty put on the TV (his sleep aid) and we both drifted off again. The next time I looked at the clock it was a few minutes after nine! So I did my nebulizer treatment and I asked Marty to get me some crackers and water so I could take my pills while he prepared my actual breakfast, so I was able to beat the nine thirty deadline.

Julie left for New Jersey on Friday; I called her this morning about eleven and she and Florence were in the car and had already crossed the Tappan Zee Bridge into New York State. They are planning to stop for lunch at the place we always stop, Rein's Deli(, which is just past Hartford. They will be bringing me, at my request, one of my favorite things on their menu, orange glazed lemon cake, which looks very plain but is out of this world delicious. Once they are on the road again it's about an hour and a half until they get here, if traffic isn't a problem (which it shouldn't be). I can't wait to see them! And Evelyn is back from camp (Jim drove up to Maine yesterday to get her), although I haven't seen her yet. It will be great to have my whole family, little as it is, all together.

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