A look at our day:

This was our schedule for the day (approximate times - give or take only a few minutes either way):

5:00am - get Meropenem infusion and hydration out of the fridge.  (Elaine gets up to do this because she is normally up at that time.  Terry remains in bed because he is up through the middle of the night and needs to get some rest.)
6:00am - begin Meropenem infusion (Terry remains in bed for this.)
              - take meds (9 pills).
6:30am - disconnect infusion.
7:30am - nasal rinse.
              - get ready.
8:15am - breakfast.
            - take meds (8 pills and 1 oil).
8:40am - walk to clinic. (Terry noticed that his hat doesn't fit him anymore - too much hair loss.)
9:00am - check in for Vidaza infusion. (The check in went rather slowly this morning.)
10:30am - walk back to apartment.  (in the chilling wind, with a cup of hot cocoa which is complements of SCCA or volunteers or ???  It's always available on Saturdays and Sundays. At about 12:00 it began to rain and the wind was blasting it into our windows so we were glad we weren't having to walk in that.  A few minutes later we had some loud and long thunder crackling around us - I love that sound.)
11:10am - take meds (3 pills and 1 oil).
                - lunch.
1:00pm - take Meropenem out of the fridge.
2:00pm - take meds (5 pills).
               - infuse Meropenem.  (Today the game is on! or was on.  Terry watched the Seahawks game safe and warm in the apartment.  We Won!  No treats for him though, because the meds he takes at this hour are to be taken on an empty stomach - nothing for two hours before or after.)  
2:30pm - disconnect Meropenem.
               - immediately begin hydration infusion (as soon as Meropenem is complete).
3:30pm - take Ganciclovir out of the fridge.
4:30pm - take meds (4 pills and 1 oil).
               - disconnect hydration.
               - immediately begin infusing Ganciclovir (as soon as hydration is complete).
               - dinner.
5:30pm - disconnect infusion.
7:00pm - take meds (8 pills).
               - nasal rinse.
8:00pm - take Meropenem out of the fridge.
8:30pm - take meds (3 pills and 1 oil) with light snack.
9:00pm - infuse Meropenem.
9:30pm - disconnect infusion.
9:45pm - go to bed.

We will keep this schedule as closely as possible for the next week or more, but will add clinic blood draws and team visits to it on Tuesdays and Fridays.  We'll play a juggling act trying to keep things going in proper timing and sequence as much as we possibly can.  We take meds with us when the timing doesn't allow us to be at the apartment.  Tomorrow will be a bit tricky because we will not only get the Vidaza infusion, but will also get the IG infusion which will take somewhere between 3 1/2 to 6 hours.  We'll take everything we need and figure it out one step at a time.

Once a week (usually Mondays) we add change dressing to our schedule, which takes about 15 minutes.  We usually do that after the morning shower.  We'll see if that timing works for us this Monday with these infusions taking up so much of our time. 


We just keep goin' ...