Yesterday, I tied up the last loose ends on transferring my medical records up to UMD-Baltimore for a second opinion. Today, I plan to schedule the actual appointment for the week before Labor Day. We'll make a quick day trip dash, hoping that I am NOT in the hospital with neutropenic fever. These even Hyper CVAD cycles and the resulting mucositis have been the bugaboo in my efforts to stay at home and heal. I do NOT take it for granted that I will remain out of the hospital.
However, the good and interesting news about this round of even Hyper CVAD is that I do not yet have ANY mouth sores - none! Have I escaped this scourge this round? Just delayed? No matter - I am grateful for every day without this discomfort. My finger neuropathy has also dissipated a bit and again I am fortunate to be avoiding any nausea, vomiting, or other gastro distress. I am still very bloated from the steroids; my face is so round I sometimes don't even recognize myself. In this next two week interlude between chemo treatments, steroids are not on my medicine list. Perhaps I will look more like myself :)
Sleep update? Oh, it was a miserable night in terms of regular interruptions. Perhaps every 90 minutes someone came in for vitals, blood draws (the regular CBC draw not the methotrexate draw), taking down the chemo bag, giving me oral meds on its strict 4 a.m. schedule, attending to air-in-line alarms, changing the sodium bicarbonate bag.... I was so exhausted going INTO the night that I managed to return to sleep each time but being roused from deep REM so many times has taken its toll. As I watched the sunrise, I realized that I will need to discuss a "sleep plan" with the Bone Marrow Transplant unit before or upon admission. 4-5 days of hospital-disrupted sleep are manageable; 4-6 weeks of haphazard disruptions and sleep deprivation might be the catalyst to strip me of my positive attitude and disposition. I shall go mad. So, I am googling existing documents and programs and mulling over simple (and acceptable) guidelines to optimize nighttime AND daytime sleep. The latter is certain to involve a door sign; the number of folks knocking and then attending to tasks or checking in during the day is EPIC. I'll figure it out :)
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So .... I am data driven. In order to begin crafting a "sleep optimization plan" for my BMT, let's track today's daytime visits (after 6 a.m. wake-up).
NOTE: RN responses to "air-in-line" alarms are NOT included. At this point, I can tackle most of these alarms by myself, opening the pump, flicking the bubble up into the tube, tapping it into the vent, and then restarting. If unsuccessful then I put in a call to my RN.
6:20 night Care Partner "just checks in" to see if I need anything
7:00 vitals
7:30 RN shift change / bedside meeting
7:55 oncology resident visits (with assessment)
8:10 sodium bicarbonate changed by RN
8:20 oncology attending visits
8:25 daytime Care Partner "just checks in" to see if I need anything
8:30 RN rigs tubing in preparation for the 10 a.m. cytarabine infusion
8:35 breakfast delivered
8:55 RN does her formal assessment (heart, lungs, pulse, edema ....)
9:10 "food and nutrition" takes my dinner order (none! I'm going home!)
9:25 my morning meds are delivered
9:30 "food and nutrition" takes my breakfast tray
9:35 tech checks the tags / expiration dates on my pump (2nd time this check has been done this week)
9:45 housekeeping visits to empty garbage
10:00 housekeeping returns to clean floors
10:20 Care Partner comes in to "check on me" and I say I will probably be trying to nap today (read: please don't check on me again although I know you mean well and I think you are very, very kind)
10:25 RNs hang my last dose of cytarabine and use blood return check to draw blood for methotrexate leveling
10:40 housekeeping supervisor comes in to survey me about housekeeping standards and effectiveness
10:45 RN returns to collect my chart (left inadvertently in room)
10:50 resident checks to see that the blood draw for methotrexate has been done
10:52 RN brings me some oral meds
WOW! I knew that visits were frequent but this exercise is illuminating!
11:05 resident reviews my at-home meds and checks on any needed prescription refills
11:15 volunteer offers magazines and books (very nice service; 2nd visit this week)
11:40 technician changes out "sharp disposal box"
12:05 "food and nutrition" brings lunch
12:20 team of three visits to determine location of new cardiac monitor (10 minutes)
12:50 vitals
1:10 "food and nutrition" collects lunch tray
1:20 chemo bag runs dry and is taken down
1:45 Daisy the therapy dog comes to visit! Hurrah!
2:15 RN team visit for monthly bed sore inventory (I'm clear!)
2:45 RN delivers FABULOUS news that methotrexate level clears me for discharge
3:20 physio retrieves bike
3:35 RN does assessment
4:00 resident visits to confirm that discharge orders are in and should be ready by 5 pm
4:10 RN responds to "infusion complete" alarm
4:15 "food and nutrition" double checks my lack of dinner order
4:40 RN responds to "infusion complete" alarm
JOE ARRIVES! Let's de-access me and get me out of here!
4:50 "food and nutrition" checks again about my lack of dinner order
5:05 one member of team of three moves post-it showing location of new cardiac monitor (away from gas line in headboard area)
5:20 RN presents discharge orders; I sign
5:30 2 RNs de-access my port and I AM FREE!
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