We thought we would do something a little different today.
We are going to try to give you a glimpse of what life is like here in Room 3206.
Elena has been here in Room 3206 for 19 days.
She is not allowed to leave her room except to walk her laps on the BMT floor each day. Here is what goes on in a typical day:
Saturday, August 4, 2012
Day + 10 Post Transplant
12:00 am - vitals and labs drawn - Elena is running a high fever and has been all evening. We convince her to take Tylenol. One of our fav nurses is back tonight - Praise God for Nurse Maggie!
12:05 am - mouth ulcer begins to bleed
12:12 am - bleeding stopped - put on oxygen for the night
12:15 am - adjust pillows and bed to a good upright position - Elena has been sleeping upright because of the terrible congestion from the mucositis - all tucked in for the night
1:30 am - Nurse Maggie in to hang Cellcept (anti-rejection medication)
2:15 am - a pump beeping - "battery system failure" - it had come unplugged from the power strip
2:50 am - a trip to the bathroom - each time this involves taking off the oxygen, unplugging the pulse ox, unplugging the power strip from the wall, gathering Elena's tubes in your hands and carefully walking to the bathroom - repeat all of this to get back in the bed
2:55 am - while in the bathroom, Elena's nose starts to bleed
2:59 am - a pump beeping "air in line" - call nurse
3:06 am - nosebleed stops - platelets low - 12 (below 10, they transfuse) - if Elena has another nosebleed, she will get a platelet transfusion
3:12 am - oxygen back on, all plugged in and tucked in again
3:45 am - a pump beeping "infusion complete" - call nurse - do 4am vitals early - back to sleep
5:30 am - time to change out some medicine on pump (some medications run continuously and the bags or syringes need to be changed throughout the night and day as they empty, other medications run for only a certain amount of time - 1 hour, 2 hours, 30 minutes -and have to be started and stopped manually on the pumps)
7:05 am - another change of medicine on pump
7:15 am - a trip to the bathroom
7:23 am - back in bed - sleep on and off
9:00 am - terrible all over pain - nauseous - throw up - vitals - fever is back - weight down a little - rounds - doctor decides to change out one antibiotic for another one and add an additional antibiotic - even though nothing has grown in Elena's blood cultures, he wants to cover her just in case there is an infection brewing - also still doing Lasix during the day to continue to pull built up fluid out of Elena's body - also increasing pain pump meds
9:35 am - a trip to the bathroom
9:45 am - back in bed - a pump beeping "occluded line" - call nurse - another fav nurse, Becca, back today - Praise God!
9:55 am - a trip to the bathroom - yes, the Lasix is working
10:03 am - back in bed - a pump beeping - "occluded line" - call nurse
10:15 am - a trip to the bathroom
10:21 am - back in bed - a pump beeping - "infusion complete" - call nurse
Watch the Olympics
10:47 am - a pump beeping
11:00 am - a trip to the bathroom - another little nosebleed, no transfusion, Lasix over
11:25 am - complete a mouthcare and breathing exercise
11:34 am - fever, cold rag on head, oxygen on, resting
11:36 am - a pump beeping - "infusion complete" - call nurse
12:00 pm - vitals - start new antibiotic
12:30 pm - Becca ups pain pump levels
12:51 pm - a volunteer stops by - we send him away - no counts = no visitors
1- 1:30 pm - Elena has a "normal" reaction to the new antibiotic - she's beet red
and gets a dose of Benadryl. During this time she also gets another mouthcare and set of breathing exercises completed. We also put the new steroid cream all over her body for the rash.
1:32 pm - watch more Olympics
1:42 pm - a pump is beeping - "infusion complete" - call nurse
1:54 pm - a pump beeping - "occluded line" - call nurse
2:55 pm - a pump is beeping - "infusion complete" - call nurse
3:30 pm - a trip to the bathroom
4:10 pm - Oxygen monitor goes off - O2 back on - vitals
4:33 pm - complete another mouthcare and set of breathing exercises - suction out mucositis yuck - watch an episode of Toddlers and Tiaras on Netflix (thanks to a friend!)
5:20 pm - get ready to go walk laps - unplugged, mask on
5:47 pm - laps completed - lotion up peeling feet and hands
6:30 pm - caps on lines changed - watch another episode of Toddlers and Tiaras
6:47 pm - a pump beeping - "air in line" - call nurse
7:09 pm - a pump beeping - "air in line" - call nurse - Cellcept is a very "bubbly" medicine so this happens a lot
7:15 pm - Elena sleeping - oxygen back on
7:23 pm - a pump beeping - "air in line" - call nurse
7:40 pm - say goodbyes to Nurse Becca - Elena hugs her and tells her in her raspy, junk filled voice that she loves her so much - so happy she will be back tomorrow!
8:00 pm - vitals - fever - Nurse Maggie back again tonight - Yay!
8:15 pm - Elena back to sleep
9:15 pm - Elena wakes up nauseous - we still have jobs to do
9:30 pm - take an Aveeno oatmeal bath
9:45 pm - throw up bile and blood
10:00 pm - lather body with new steroid cream
10:10 pm - lotion up hands and feet with a different cream
10:30 pm - fever rising - take nighttime pill
10:50 pm - suction out mucositis
11:04 pm - completed fourth and final mouthcare and set of breathing exercises for the day
11:13 pm - oxygen back on - check temperature again - same - going to go ahead and take Tylenol
11:25 pm - adjust pillows and bed, all tucked in until midnight vitals and then we will begin another day - our 20th - in Room 3206
We hope this gives you a little better understanding of what Elena's life is, and has been like since checking in. As you can see there is never a dull moment, and very little time for rest. This doesn't even show you the linen changes, cleaning and disinfecting, and hand washing that is needed throughout a day. We pray that you continue to keep Elena and her complete healing in your prayers.
"Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and His understanding no one can fathom. He gives strength to the weary and increases the power of the weak."
Isaiah 40: 28:29