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.
In Him,
The Tates
"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
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Oh my...I thought I had an idea of what it was like, but I had no clue. This is a race of endurance while persevering through the moments. And what hard moments. Prayers continue for complete healing and that each minute be filled with God's loving arms wrapped around you, filling you with the peace only He can provide. I love you all. Hang in there Elena! Aunt Linda
ReplyDeleteThat's too much beeping for sure- and just so much for you guys, and for Elena to endure - praying that each day will get better, and that there is more rest to come - each day is a day closer to healing ...love, The Slaters
ReplyDeleteOh my goodness...I was exhausted just reading about your day!
ReplyDeleteOur family is thinking of you and praying for you daily.
I thought of you today as I was reading one of my favorite books, God Never Blinks. There's an old saying people use to cope through bad times. "This too shall pass." Most people don't want to use that when it comes to good times. We don't want them to pass. We want them to last forever. But sooner or later, everything changes. Life gives us challenges!
"The secret is to ride life like a raft in a river and let it carry you through the white water and the still water and beyond. Float on down like a leaf, holding on to nothing, trusting the flow of the river."
Hoping and praying that today is a better day in room 3206.
Love,
The Mraz Family
Oh my goodness!! That wore me out just reading about 1 day. Praying for all of you!
ReplyDeleteThe House Family
Praying for stamina, endurance, strength, and healing!!!! We love you guys!!
ReplyDeleteTate Family,
ReplyDeleteYou all are in our prayers. I had no idea what Elena goes through on any given day. Thank you for giving us a glimpse even though it is impossible for us to truly understand. Please let me know if their is anything we can do or donate to help ease her time there.
Andrew, Allison, Carterr, and Garrett
Isaacs
Oh Sweet Child... We are praying and all of NFUMC is praying for your full recovery and relief from pain and all this... YUCK! When you pass through this on day 100 and then day 1000+ you will be an INCREDIBLY POWERFUL witness to those going through ordeals like this. You've been on the news - How about you write a book?
ReplyDeletePraise God for Maggie and Becca!
Praying through the days...
Eric, Melissa, Sam, Ben
The Szink family is praying for you! If I can bring you anything, I work Tuesday/Wednesday and Friday day shift this week. Please let me know. Text or call my cell at 678-478-0799.
ReplyDeleteFaith Szink
Just loving you all. Prayers are continuing. Love the McBrayers
ReplyDeleteDear Christy and Elena,
ReplyDeleteWow! I am absolutely speechless. I knew your days in the hospital were difficult, but I had no idea that they were like this. You are in our prayers, have been for quite a while, and will be forever more. I pray that today is a good day, and that you get some much needed rest. love, kathryn and megan
Oh my! Elena you have won about 100 Gold Medals in the hospital Olympics and should be recognized as one of the best athelete of all times! Hang in there, celebration time is coming!
ReplyDelete