Thursday, February 13
Day 32

Monk John!  Since he was cold today, I put this Sleepy Sleeve by

youregettingwarmer.com

on John. 

This was a gift sent by Linda Borton McCabe.  It doesn't actually go over his head, but he loses so much  heat out through his, that I just drapped it over!

We're in a new room, 7577, but with a lovely view, a smaller corner room.  But we had some pretty difficult news from the infectious disease doctors telling us straight up that this graft infection is serious, and one that may be able to be suppressed but not eradicated.  Hard to hear...lots of unpleasant implications.

The other development today is a further delay in departure for rehab; but it could be a good one, IF he is able to be discharged without dialysis.  So, if we have to stay a few more days here, with the long term view of no further, dialysis, we can deal with that.  In the meantime, we will wait and see...


 
Anatomy of a Day in Room 7237

7 am          Night nurse gives 'bedside' report to Day Nurse; rather than being bedside, it is really by the computer screen, but it is right here and well within our hearing.

7:30 am     John sitting up in bed with student nurse, Emily (our favorite!) taking vital signs; he is starved so I peel an orange for him which he says is delicious...waiting impatiently for breakfast

                 Emily wants to get him up in chair for meal but he prefers to stay in bed because he is comfortable.  Nurse insists he needs to be in chair, but breakfast comes too quick so he eats sitting up in bed

8:30          Nurses get him to his chair but the standing and walking making him light-headed, dizzy, and weak;  sits down, tries to take his pills with applesauce, but vomits and is too weak to continue

                 Janitor comes in to collect trash

9:00          Weakness continues; blood pressure has dropped but slowly comes back up

9:30          Still trying to get him to take his pills; they need to be taken within 30 minutes; instructor comes in to discuss John's weakness and encourages pills be taken

10             Student nurse Emily getting his bed ready and prepared for bed bath
                 Position in chair changed to lessen pain on tailbone
                 Trying to take his pills again
                 Dietitian comes in to discuss Mechanical/Soft/Vegetarian diet and his need for Ensure/Calories
                 Catering Associate comes in take lunch and dinner order from me for John

                 Bed Bath while John still feels weak and out of sorts

11              I walked down to the Gift Shop and bought us some Chocolate Covered Strawberries for our Valentine's Day.
                 When I got back, Physical Therapy was here ready to take John for a walk.  He walked through the waiting area and on to the windows that overlook Forest Park and the ice skating rink.  Walking back, he never sat down even once, and surprised us all, especially after his orthostatic hypotension episode.
                 Emily is going to put some lydocaine on his tailbone and a new patch, too.

12             Dr. Maniar here:  will appeal our insurance for Acute Rehab

                 Infection disease Dr. Vasquez:  fearful that infection will return, IV antibiotics 6 weeks
                 Very lovely and sympathetic doctor; kind, concerned; not wanting to spoil our Valentine's Day!

1                Occupational Therapist
                  Standing, putting pants on, brushing teeth, balance assessment
                  Back to bed for some more bed rest

2                Nurse Becky comes to change his chest dressing
                  Cleaning lady comes in to clean up the room
                  Talk to Social Worker, trying to understand.  She said, "There are barriers..."
                  Terry, a lady who deals with the whole dialysis question will come talk to me
                  John napping in bed and comfortable...so thankful there is not much pain

3                News that we are being moved to another unit, same floor, Room 7577
                  Very difficult two hours with pain from suppository and prune juice; more agony for John

4                Infectious Disease team came in and verified what Dr. Vasquez had said; graft infection is very serious, no chance of eradication just hopeful they can keep it suppressed...hard to hear

5                All packed up ready to move; Terry, a renal nurse suggest that John's kidneys may be recovering enough to go to Rehab without dialysis.  Staying here a few more days might get us to that place and that would be a blessing...just like we have been praying for!

6               In our new room with two windows, corner room, smaller, but beautiful view just like from dialysis...John resting, no appetite...
                 Nurse comes in to reattach monitor wires

7               

Well...that's as far as I got....just to give you an idea of what goes on in our room!  And, I failed to post this earlier....