Saga XII: Slow Motion

Saturday was such a fabulous day.  Good news kept coming.  With each hour, it seemed another IV would come out – he started the day with 7 or so.  Another line would be pulled.  Another monitor would be turned off.  Waiting for a room on Floor Four (Recovery), we watched the second game of the Final Four basketball championship.  Scott was certain they were reruns.  Later I learned that the same two teams played battled each other last year.

At last, the Transportation Team arrived, and we were walking the walk to Recovery.  Sarah and I may have been dancing more than walking.  We had graduated from the urgency of an ICU.

On the ride down, we were giddy.  Scott was asking to swipe every cup of soda he spotted, Sarah was complimenting nurses on their complexion.  When we saw the room, we were floored.  It was like a comfortable, dated hotel.  There were very little electronics, very little sign of medical assistance at all.  Scott may have asked: “what is this, amateur hour?” in his haze, and his clear recognition (and my appreciation) for the lack of need of all of the bells and whistles the ICU had to offer.  It was like apples and oranges.

The room had older wallpapering, medium-oak cabinetry.  Floral curtains.  Definitely classy back in it’s day, but…  Let me just put it this way: there was a VHS player.  Yeah.  The private bathroom, however, was slick!  It was roomy and very nice.  And to think, a bathroom in the room?  We were going to be living it up!  Sure, it was for the patient, but they were pretty lenient here, I could tell already.  No more ‘beeping’ back in after every potty break for us.   Multiple times they offered Sarah and I tea, coffee, juice.  Blankets.  “Anything” to make us comfortable.  They were gems.

The nurses were much different.  These were all CNA’s instead of RN’s (tho’ there were a few of the latter on the floor).  They were all – well, stereotyping, but “mostly” would be accurate – older, heftier, and … comfortable.  It was clear they were here to keep you cozy and comfy while recovering, that there was no need for the high-skill (and ridiculously thin, fit, and attractive females – what?!) that the ICU provided constantly.  They were gentle, loving, patient and so very kind.  Don’t get me wrong, the ICU folks were amazing, but these ones were all about hospitality and caring as their #1 goal.

We instantly moved from perpetual monitoring to once every 4 hours.  It made me nervous.  But it was a good thing, right?  Right!

Scott’s Mom, Sharon, was at the hospital still, and was able to visit his room a couple of times.  His Dad John, and John’s wife Nancy, also visited several times.  We tried to keep visits short, as Scott was still very exhausted.  He was up for a visit from a couple of friends who happened to be driving by, and so Ruth & Rachel came up and delivered flowers in person.  His first visitors outside of family for what seemed forever.

Sarah and I were giddy with excitement.  There were nice recliners, plenty of room for us to sleep comfy all night and to set out all of Scott’s gifts and cards and posters that people had brought.  Until now, I couldn’t even bear to read them myself, Scott unable to.  They were the sweetest, most loving, encouraging, warm words and gifts.


One of many in a ring bound ‘book’ of words of wisdom, handmade by I-don’t-even-know-who all

We were rubbing Scott’s feet, his arms.  We were all over him.  It was so good to see him awake and semi-alert.  It was so good to hear him talk, if raspy, and enjoy visiting with us and others.  It was sunny out.  Nancy brought Sarah and I a slew of Aveda goods to clean up with.  We were so happy.

At 7pm, The Recovery floor started to slow down.  The hallway lights were dimmed.  Things really mellowed.  It was shift change, with fewer nurses coming in for the night shift.

Sarah and I had spent a while in the waiting room earlier in the afternoon, then I had to run down to connect Sharon with friends who were picking her up to take her to some friends to sleep comfortably for the night.

When I got back, Sarah was cozily sitting next to the bed.  Scott looked uncomfortable.  He said his head hurt (it had for a while), and his stomach was sore (to be expected, right?).  Sarah had already pushed the call button to ask for some Tylenol.  They hadn’t been back with it yet.  Things were quiet in the hallways.

I was frustrated that I had spent so much time away from Scott this evening, clearing up logistics and other things.  But I was back now, and ready to get us all settled and snuggly for bed.  I walked up to the side of the bed to love up on Scott (as much as one can from beside a hospital bed, sides up).  I ran my fingers through his hair.  He looked miserable.  He rolled over to lean closer to me.  And then I saw it.  One of the worst images that creeps up on me still.  One of the few that haunts me.   Continue Reading »

Saga XI: I Made It

May 29th.  It’s 9am when I posted:

Scott is doing really, really well. He’s still fairly out of it, but did squeeze my hand this morning and showed signs he could hear me. They are starting to take him off of meds more now, hoping to wake him a bit, tho’ will leave him somewhat foggy and comfortable.

I spoke with one of the surgeons who was beaming with pride, who seems to love Scott in a special way. I expect to visit with Dr. Orloff later this morning at some point.

Scott is swollen (from drugs, transfusions and surgery), with a slight fever, and covered and poked with tubes and attachments – but he’s doing excellently!

Please continue to pray that he heals well (no bleeding, no clotting, diminished fever, no infection, etc), that the shunt “takes”, that he is comfortable when he wakes.


These is a day of nervous excitement. And the need for bedside napping! I treasure these moments with Scott. This crazy weekend is filled with memory-makers in the making.

I have so many amazing stories to share about this journey so far. I’ve said to many doctors in nurses: “even tho’ this sucks royally, and even when he’s nearly crashed – the timing and situations have been so impeccable that I just can’t help but be thankful.” I can’t wait to share more of the many, many details of the little things, but for now – I want to go love up on my fellow!


12:30 in the afternoon

12:30 in the afternoon – lookin’ good!

Posted from a friend: Thinking of my friends Scott & Summer this morning! Trials always show us where our hope truly is. Or as James 1:2 puts it, trials “test” our faith showing what it is made of and God brings forth much good if we trust Him through our trials. My friends Summer and Scott are living out their faith and demonstrating that their hope is truly in the Lord!

Jere is a beautiful prayer that captures what Summer has said in various posts.

“In you, Lord my God, I put my trust. I trust in you; do not let me be put to shame….No one who hopes in you will ever be put to shame, Show me your ways, Lord, teach me your paths. Guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long. Remember, Lord, your great mercy and love, for they are from of old. He guides the humble in what is right and teaches them his way. All the ways of the Lord are loving and faithful My eyes are ever on the Lord, for only he will release my feet from the snare. Turn to me and be gracious to me, for I am lonely and afflicted. Relieve the troubles of my heart and free me from my anguish. Look on my affliction and my distress Guard my life and rescue me; for I take refuge in you. May integrity and uprightness protect me, because my hope, Lord, is in you.” (from verses in Psalm 25)

Keep praying for:

1) no more bleeding
2) no clotting
3) diminished fever
4) no infections
5) that the shunt they put in will “take”, and
6) that Scott is comfortable when we wakes


They took all tubes out of Scott’s throat. He’s waking up a little, smiling and saying all sorts of funnies. He is even cracking delirious jokes.

He is doing very well.


“I made it” – Scott Steenbarger’s first words in days


220pm: He’s still so very sleepy, and so not coherent. But so very good.  <3


5 pm: Scott says he wants Mountain Dew and root beer.  He is very, very sleepy. :)


May 29th 11pm: 24 hours ago.

This has been the worst – and the best – week of my life. Continue Reading »

Saga X: The Red Tent

last nights hotel

last nights hotel

Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the LORD your God is with you wherever you go.
Joshua 1:9

saying goodbye to the MICU

saying goodbye to the MICU

Posted by Summer around 8:00am Wednesday, May 28th – Leaving the Medical ICU for good.

The nurses all love Scott, and were attached to his story and life.  They saved his life.  They were sweet and loving and fabulous all along.  He has made a big impact.  I invited them all to come visit later today!

Heading to surgery!

Sarah and I went down to a more private waiting room on the 8th floor.  Soon folks started arriving to surround us with love, prayers, and distractions.  By 10am, I got the call from a nurse in the Operating Room that all preparations were finished, and surgery was beginning.  There was a brief moment of panic.  As soon as it came, I pushed it away.

Girls brought baskets of food and gifts for Scott.  We ate.  We talked.  We laughed.  We cried.  New friends were made by all.  It was hard to not be thankful for these people in my life in those moments.  It was hard not to see all of the good around me.  I didn’t have much opportunity to delve into my fear.  To remind myself how intensely risky this surgery was.  That Scott was on a table, open.  <shudder>

So much of the day I lived like a fly on the wall, observing a room full of beautiful women – like a “red tent” of centuries ago, women sharing with women deeply and compassionately.  The day went swiftly by.  The O.R. nurse kept me in touch completely.  As ridiculous as it may seem, the whole thing felt like a dream, even in the moment, not a nightmare.  It was beautiful.  There was so much richness during that day.  Even in the moments of horror when my mind wandered to the Operating Room.

Just shy of noon, the Operating Room nurse called again and said they were just getting to the “problem area”, and things are going well.

keeping the babies happy at home

keeping the babies happy at home

My Dad was great about texting us pictures all the time.  It was such a blessing for us to feel a part of what the kids were up to, and to also be comforted by knowing they were having such a great time.

2pm, Summer: Nurse update: They moving right along, he’s stable, and things are good so far.

Just after 4pm: Nurse update: They’re truckin’ right along, still stable, things are great so far.  6 more hours to go.  Maybe.  Morale is good. Continue Reading »

May 27th morning, from Summer: Scott had a great night.  While they decompressed the [Minnesota Tube] at midnight to give Scott’s stomach some circulation, he didn’t bleed.  This is great news.  They are leaving it in to protect him until tomorrows early morning surgery, decompressing when needed. 

It was such a beautiful relief to see Dr Orloff over his bed, and to talk to her about tomorrows surgery.

Its going to be very risky, she openly admits, but he is in the best (many, many) hands this side of Heaven.

He looked so good.

Last eve I started struggling with guarding my thoughts, my mind wandering to dark places, but I was covered in Truth and love and quickly found my way back to focusing on the NOW: my husband is stable.  There is a plan.  And we are in good hands.

We are all in Good Hands.

Your prayers are felt.  I feel so protected and enveloped.  I’m so thankful for our church, friends, and family.  More than words will ever be able to convey.

Yesterday evening our pastor put out the call for prayer and fasting starting at 7pm tonight, and through Scott’s surgery.

“so that there may be no division in the body, but that the members may have the same care for one another.  And if one member suffers, all the members suffer with it…” ~ 1 Cor. 12:25-26

Gathering to pray for the Steenbargers.  ~ Rachel D.

Gathering to pray for the Steenbargers. ~ Rachel D.

If you abide in me, and my words abide in you, ask whatever you wish, and it will be done for you.  -John 15:7

Posted by our Pastor:

Tonight I feel very blessed and proud to be the pastor of Woodland Christian Church.  What a wonderful turnout for the prayer meeting.

Be still, and know that I am God. ~ Psalm 46:10

We have prayed and done our best to put our friend and brother Scott Steenbarger in the Lord’s hands.  We will meet again tomorrow at 6am, and then we will wait on the Lord to see what He does.

Therefore the LORD will wait, that He may be gracious to you;
And therefore He will be exalted, that He may have mercy on you.
For the LORD is a God of justice;
Blessed are all those who wait for Him.
Isaiah 30:18 

From Summer, late in the eve: I just spent the best twenty minutes here yet.  One of the surgeons talked me through this and tho’ there may be complications, he is not only confident, but a wee excited (in a good way!).  He moved from Germany to study under Dr. Orloff.  That’s how amazing she is! 

Surgery starts at 7:30am tomorrow!  Could be up to 12 hours.  It’s just a guess, though.  They feel like waiting the last day really has gotten Scott in a much better position for this. 

Scott looks SO good this evening, tho’ still sedated!  They’ve rearranged him to a partially sitting-up position, removed a bunch of excess equipment from his room, and have gotten him comfortable.  He looks amazing, and his numbers are looking SO good!

They anticipate moving him to Trauma ICU right afterward instead of MICU for several days, keeping him asleep for a couple of days to recoup.

Feeling hope.  Anticipating good things.

With Sarah now here, and Scott medicated to sleep, we borrowed some medical sheets and camped out on the MICU waiting room mini couches for the night, where we’d call home for many nights following.  We spent the day visiting with friends and loved ones.  Time flew.

Posted by Summer, just before bed: Missing my man’s voice.  Excited and hopeful for tomorrow.  Nervous, but standing on some solid ground right now.  I’ll whisper sweet nothings in his ear and send him encouragement from all of you.  He will be so blessed by all of the gifts, service, time, prayer – this has been an incredible journey already… Though sedated, I can’t help but believe he will soak it all in.  I can’t wait to show him all of the drawings and notes and love.  I can’t wait to snuggle in to his warmth.  I adore that man.  I’m so thankful for him.

In this world you will have trouble.  But take heart!  I have overcome the world. – John 16:33

It’s Monday night, May 26th, and my head was getting away from me.

When Scott was awake, we were in push mode and stayed active.  There wasn’t much time to ponder.

Now he was asleep.

Now I had more time to think.

We’d now been in the hospital for three days, since last Friday.  That meant Flynn had not nursed for three days.  I had tried not to think about it up ’til now (though dabbled briefly with being sad about it one or two times).  I knew there was no way to make that happen reasonably up to this point, and figured we would pick back up where we left off.  But now it was really starting to become evident that this may the beginning of the end of that era.  It broke my heart.

Sure, Flynn is plenty old to stop nursing.  He would be fine with it.  But I wasn’t.

I had to let it go.  This adventure was becoming much more intense, and I was realizing that it was not going to end soon.  That breastfeeding was the least of my concerns or potential losses.  This somehow almost made leaving the ranks of a nursing Mama even harder.

I knew that it was small potatoes to what I had to face letting go at this point.

I had to let go of my husband.

Scott is not mine to keep.  I had to put all of my trust in the Maker of this Universe.  I had to remember that this is all temporary.  I didn’t know what parts of Scott I’d lose, but I knew I had to place him in God’s Hands, knowing full well mine could not hold him alone.

It took an instant.  And then my tears came like a flood.

This is so hard.  Please pray that my mind stays still.  I’m struggling. – Summer, Monday around midnight Continue Reading »

This is the air we breathe, this is the air we breathe, Your Holy Spirit, living in us.
Scotts support is far more than anyone knows.  Continuous prayers being lifted.  ~ Jane D.

A normal spleen is 2.5-4 inches tall.  Scott's is

A normal spleen is 2.5-4 inches in height. Scott’s <> pre-surgery.  It’s so big, he has a “pot belly” because of it.

Monday, May 26th, 6:30pm:  Surgeon just came and spoke with me.  Scott is stable.  Praise God!  He is medicated to sleep comfortably for now.  They may try to wake him up later.  He is still covered in support to keep him stable right now.  He’s in good hands.

The surgeon said that all of the doctors are in town now, but not on schedule.  They’ve consulted, and would like him to gain strength.  So we’ll wait.

They have booked an operating room for tomorrow morning, but are hoping that things are going so swimmingly that they can hold off until possibly Wednesday.  That said, he assured me they (the SPECIAL/best team) are all on-call, equipped, and ready to do this at any point if they need to.

Surgeon was very confident.  And kept great eye-contact with me.  That matters.  And his comforting accent.

Though he is still in critical condition, I think we are out of the darkest part of the woods of this episode.  And will have the best doctors now that holiday/weekend are over “enough”.

I’m breathing again. 

Scott’s liver – tho’ it functions perfectly – has nodes in it that won’t allow blood to flow through as quickly as normal, so his body has rerouted it over years, enlargening his spleen, and creating large veins in his esophagus and, as of last fall, his upper stomach. He goes in annually to have his esophagus varix banded, as needed.  His spleen is stable he’s just not supposed to do contact sports, etc… but the upper stomach varices are more dangerous, and cannot be banded.  

We’ve known this could happen for years, though have been grateful for no problems ’til now.

The surgery will essentially divert half+/- his blood flow away from his liver, reducing pressure/veins as a possible longer-term fix (as well as immediate). It will be using a shunt between his spleen and kidneys (not the common portal shunt, or TIPS, since Scott’s is not an option). Because of his maze of veins throughout his abdomen, and because this surgery is no longer used regularly, and because of his decreased health, it brings a lot of risk.

Until now, it wasn’t worth surgery. Now it makes sense to. And the doctors that will be with him are abundant, and are brilliant.

They learned the other night that they can’t do any of the “quick” fixes because of his complicated anatomy, so we’re jumping ahead to the bigger fix.

Let me expound…

Note all of the smaller, blue veins in the photo below.  The ones near the esophagus are the ones that the doctors band with a scope in Scott’s throat, when needed.  Last fall, two were found bulging inside his upper stomach, likely rupturing, causing these recent bleeds.

instead of cutting the spleen vein, they would actually lay it together with the kidney one, allowing blood to flow to the IV through that.

Instead of cutting the splenic vein from the smaller blue one that attaches to the liver, they connect it laterally with the kidney, allowing blood to flow to the largest blue vessel (leading to heart) through that.

The liver team was proposing that they take the vessel leaving the kidney, and the one leaving the spleen, and laterally sew them together for a large portion of space.  This would effectively send all of the extra pressure out through the kidney vein to the vena cava, which is a high pressure system leading to the heart.  This would potentially remove all future risk of bleeds, even putting him in a safer, better place than when we started all of this.  The doctor mentioned Scott growing old “normally” if it was successful.  This means the surgery would potentially leave him healthier than when we started all of this.  He had me at “growing old”.

This surgery, though more common in the 1970’s, is extremely rare, performed about one per year nation wide.

The surgeon, Dr. Michalski (or, “The German Doctor” as we lovingly dubbed him for weeks) didn’t only explain the benefits, he also explained the potential risks, some rather huge.  Death obviously being the worst.

Scott could get Hepatic Encephalopathy (confusion because of toxins) since some blood would be re-routed, not going through the liver to be filtered.  We talked about why that was unlikely, based on the amount of blood his liver was already re-routing over the years.  There would probably be no more or less after surgery.  There are medications to help this if it happens, and that they could reverse the surgery, if necessary.

Dr. Michalski explained that the shunt could clot,  causing the surgery to have been worthless.  This was most likely to happen between 3 to 5 days after surgery if it were going to happen.  He assured me that during surgery they would have a plan A, and then A1, A2… then B, B1, B2, etc…  They would map out multiple plans, including many alternatives, as detours deemed necessary.  They would meet tomorrow morning to discuss further.

Our team would consist of the best of the best.

As he was wrapping up, I had to ask: “Are you excited?” Continue Reading »

Saga VI: Cared For

It’s still Monday, May 26th.  Memorial Day.  Our children were surrounded by friends and loved ones at a party in Woodland.

Flynn and I had fun playing catch in [Clairissa's] backyard for a bit this afternoon. He has a good little arm! And it is officially time for me to get a phone with a decent camera. I so wanted to send you a pic!”  ~ Lisa

Scott had filled more than a one gallon bin before transfusions started.  He ended up receiving over 12 liters EACH of red blood cells, plasma, and many bags of platelets this last time.  Remember during the second bleed when the nurse told me that two was a lot?  Yeesh.  I was so thankful that they were able to get on top of it.  That the bleeding had stopped.  And especially that there were mechanisms in place to prevent it from happening again for at least the next twelve hours.

Fact: An average 150lb person has approximately 5.5 liters of blood in their body.

After the excitement piddled out in the ICU room and knowing that Scott was sleeping soundly, Sarah and I went into the waiting room.  Doug’s lovely wife, Jessica, was there still.  Doug and the kids had left for home.  She was a real gem, praying with us and talking to us.  Others joined later.

For the first time, I had to think ahead a little.  What if’s ran through my mind, but as quickly as they came, I pushed them far away.  Meanwhile, I needed to figure some things out.

From Jessica:  So I’m here with Summer and asked how else we might help and serve them.  Here’s a list of things she said need doing around their old house that she’d planned to do.  Once these essentials are done, the house can be listed…

Jessica posted this then and there.  I had briefly described some items that needed resolved, and she went right to the task.  Within minutes – literally – folks from our church and others had messaged saying they would take care of all of it.  This means mowing, replacing skirting, repairing the well house, installing gates, floors, removing debris and scrap pile, moving trailers to our new farm, etc…  They even painted the outside of our house.  When I say “they”, we don’t even really know who all it was.  We know of over a dozen who were huge players in the projects, but also realize there were many, many others who contributed.

We had a realtor lined up for the job back in the winter that we had been communicating closely with, but one of my closest friends took it upon herself to call her realtor friend and set some things up.  This realtor offered to do it pro bono.  Pause for shock value.  She gave Sarah the necessary information to pursue Power of Attorney, since Scott was in no position to sign papers.

We had initially posted the property for rent back in January.  Within a day, we had 24 inquiries.  We were stunned.  We lined up several folks for appointments, several asking if we’d be interested in selling instead.  At the time, we thought (we justified) that renting would make more financial sense.  We realize now that we were just scared to let it go.  And now, more than ever, we realize that we are in no position to hang on to it, and can use our investment better with it sold.

Prior to our even listing it officially, someone saw Jessica’s call for help over Facebook, and inquired on purchasing it.  I directed them to the mock “listing” that we had put up on this blog.  Still wanting to pursue it, they met with me at the hospital later, where we were able to lay out all of the pro’s and con’s, and to discuss their ideas and hurdles.  We parted with the commitment to pray about it, and move ahead with a contract if it be God’s will.  They were so diligent and communicative from then on about their progress.

I have yet to make it up to the old farm as of now, but friends sent these pictures of the house, before and after exterior painting:





I couldn’t believe all that people were doing for us up at the old farm to get it ready over the next several days (and even still!).  I didn’t even know at this point how long we’d be in the hospital, or how bad it would be.  Or even if we’d be able to get it listed or sold or occupied – and yet they didn’t hesitate to jump on all of it.  They certainly weren’t easy tasks!  I cried like a baby.  In fact, every time I looked at Facebook, I cried.  And so I would only skim it now and then, soaking in the knowledge of seeing so many following Scott’s story, sort of “there” with us in a sense.  Every sweet word made me well up, overwhelmed with gratitude, and I’d quickly zip out of Facebook and back to reality before I turned into a (feeling loved) basketcase.  I knew it’d lead down a sweet, slippery slope of what would start as happy tears, but could quickly go south if I wasn’t careful.

Before Sarah came, I knew I had to stay strong.  Once Sarah was with me, she made me be.  There were so many times I wanted to just curl up in a ball and cry, and she wouldn’t let me.  Sometimes it made me want to punch her and run off to a corner, but I knew she was right.  And I’d remind myself: Why cry?  In my head, I knew there were only a few reasons to cry, none helpful for me or anyone else at this point.  I knew that crying and wallowing would be based on fear and self-concern.

And this just wasn’t about me at all.

I made a promise to myself early on to hone in to the very moment only.  Not to let my mind wander.  I asked God so many times to stop my thoughts, and He was faithful.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.  ~Phil. 4:6-7

Even though we had spent the first days without visitors at the hospital, I never felt alone.  I knew there were so many praying for Scott, and for me, too.  I couldn’t for a single second not be grateful.  It made it hard to even think about crying, knowing how much we had to be thankful for.  How much God was showing His love to us in every way.  I felt like I was in the crook of His arms the whole stay.  Even still.

I LOVED seeing your kids today playing and carefree and being SO loved on by the body of Christ. It was such a sweet sample of the extension of love that runs deep for you and Scott.  I played with Flynn and Cedar together for a bit and every time I looked in his eyes I would see Scott and breathe a quick prayer up for you guys.  Your kids had a lot of fun today and are well loved and cared for.  I’d like to say that I let Colby beat me at a game, but that would be a fib, he won fair and square.  He’s too smart for me, and he knows it. Just wanted you to know what a nice day they had.  Kendra was surrounded by lots of girlfriends, I saw Adyn on the volleyball court a lot and down by the creek with the boys.  Colby was all over of course, Flynn was in everyone’s arms, and kissing on a baby doll and patting it’s back.  It was of course, SO cute.  I forgot to tell you the other day that right before Colby jumped in our van he raised a finger and said “now nobody better call me CUTE!” so I refrained today and transferred it to Flynn and Cedar.  Your family is loved far and wide, so appreciative for the updates.  So glad you’re breathing.” ~Bonnie

 I am so thankful for Mama’s nurturing my babies and being there for them during this!  It’s so comforting. ~ Summer

Around 6:30pm, one of the liver team surgeons came out to talk to me.  After the angiogram on Saturday, Scott officially graduated from being an Interventional Radiologist patient to a Liver Team patient.  They were pulling out the big guns now.

by John Zumstein, 13

by John Zumstein, 12


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