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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:

before

before

photo

after

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

Who are we kidding, I’ve been avoiding blogging.  Each entry gets harder to write, harder to relive.  Some things too close to my heart yet.  The next posts may not be all-inclusive on details, as I’ve been working on assembling it into a larger format at this point.  But I do want to share a lot of the awesome (and petrifying) experiences.  It is with a very deep breath that I begin again:

Monday morning, May 26th, came and went.  Scott’s lab results showed his hematocrit down early on, indicating a loss of blood possibly.  The doctors thought it was diluted, so they sent off for another and we waited, not too worried.  We didn’t end up hearing back about this.

Our Associate Pastor Doug and his family came to visit late-morning.  With limited visitation in the ICU, Doug came into the room alone.  He shared passages in the Bible that had encouraged them during trials in their life and prayed with us.  Moving to small talk, I excused myself to find the kids and Jessica in the waiting room.

Theo, their youngest, is close-ish to Flynn’s age and about the same size.  It was so nice to watch him run around, his big brothers and sister chasing after him.  I was really starting to miss our kids by now.  But until we were out of the ICU, we decided to hold off as to not worry them too much with visuals.  We talked to them daily, and kept them in the know about what was going on, keeping it as simple as possible.  Adyn had been there when Scott first started bleeding, and understood what was going on fairly well.  He was able to support Kendra and Colby really well at home.  Over the years, they all knew of Daddy’s liver disease, and what may happen.  That really helped them (and me!) as we took each step at the hospital.

It was so nice to be around other sweet littles, to be embraced by Jessica!  The visit was short and sweet.

Doug stepped into the room, and looked me in the eye to tell me that Scott was throwing up blood again.  My heart stopped.

Jessica prayed with me, and I hustled back to Scott’s room.  When I got there, he was sitting on the edge of the bed, projecting blood into a bucket.  There were several doctors and nurses around, urging him to lay down.  He didn’t want to, unsure how to vomit into the bucket if he did.  I squatted down in front of him, holding his leg and told him firmly that he had to lay back, that I would hold the bucket as well as I could, but we had to get him flat.  I didn’t know why they were laying him down yet, but later realized it was because he wasn’t clotting on his own, and was bleeding more this time.

Sarah texted.  She was up for the morning and drove to OHSU.  She was in the waiting room.

I texted her a one liner or two, letting her know Scott was bleeding again, and I couldn’t come get her.  She sent a quick message out so that folks could know to pray.

“Scott’s bleeding again.  It’s bad.  It’s really bad.”

As soon as Scott laid back on the bed, he was turned onto his side and tilted the bed so that his feet were higher than his head.  He was signing “I love you” to me, unable to do anything else.  Then he wasn’t.  His body started panicking as they held him down.  They were quick to give him drugs to soothe him.

Before I knew it, a box from Red Cross had arrived.  Also a new, larger piece of equipment arrived that could push liters of blood four bags at a time, fast.  They alternated red blood cells, plasma, and platelets.  I watched them add tally marks to his dry erase chart on the wall… We were swiftly surpassing 3, then 4, then 5… It just kept going.

“No what if’s.  Serenity now.” – Summer

A set of doctors was at his wrist, inserting a monitor that would more accurately track his pulse and blood pressure with an ultrasound and scalpel.  Another set was trying to insert IV’s.  Another, watching and pushing blood product into him.  I was signing consent forms left and right as they were working on him, staying close to his head, talking to him the entire time:

“Don’t worry.”

“I’m right here.”

They’ve got this.

I was surprised they let me stay in the room.  In fact, they let Sarah & I stay nearly 100% of Scott’s hospital experience, sans only a few procedures that required a sterile atmosphere.  When there was a moment of pause, I quickly went out and get Sarah.

We hugged.  I explained ever so quickly what was going on.  For a half of a second, I almost broke down but she stopped me in my tracks.  We went back into the ICU together.  When we arrived, Sarah hung back in the hallway when I went in.  I instantly went to the head of the bed to talk to Scott.  A few minutes later, Sarah came in and sat in the chair behind me.  Apparently she wasn’t quite prepared for what she was seeing, and nurses thought she was about to pass out.  Instead, she says she was just struggling with her emotions.  From then on, we laughed about how great I was in the moment only, and she was good outside of the moment only.  It was a great indicator that we’d be a great fit for each other for this crazy adventure.  But then, we already knew we complimented each other well.

"Minnesota tube"

“Minnesota tube”, only his went through his mouth, not nose.

The bleeding wasn’t stopping.  The doctors needed to put in a breathing tube to protect Scott’s airways and lungs, and had suggested adding a “Minnesota Tube” (above) to stop the bleeding.  We had to step out for this.  We walked down to the end of the ICU hallway where we could watch his doorway.

During our wait, two hours after he began bleeding, we posted: “Still transfusing massive amounts of blood.  Breathing tube.  Now procedure to put balloon in belly to put pressure on his bleeding vessel.  Not stable, but docs are more confident.”

Waiting took so long.

The peace that passes understanding is my plea.  God is good.  All the time.” – Summer

It was probably a half hour later that they let us back into the room.  Scott was medicated and sleeping soundly.  Gone for what would be days.  He was covered in monitors and tubes.  The Minnesota tube had done the trick.  It put pressure on the varix that was ruptured and bleeding – but was a strange sight to behold.

Imagine this hanging up and over the ceiling mounts.

Imagine this hanging up and over the ceiling mounts, the right side coming out of Scott’s mouth.

Because his bleed was coming from a bulging vessel in his upper stomach, they only inflated the lower balloon (pictured above), tying it up and over the equipment movers that are mounted to the ceiling, hanging a saline bag to the end of it for added pressure.  This way it’d squeeze tight against the upper part of his stomach while inflated.  Later, they added an IV tree to the foot of his bed, using it instead, making things more visually appealing and less “white trash” looking.  We had to chuckle.  What else can you do?

It was at 4pm, four hours after Scott started bleeding this time, that we posted: “The docs put a balloon into Scotts belly to put pressure on his bleed.  He has received a lot of support (blood, oxygen, etc), and is tentatively stable, tho’ critical still.  They believe the bleeding is under control.  He is sleeping and comfortable.  We wait for the “holiday” [on-call] surgical team to get finished with another patient then decide if they are comfortable to do this rare surgery now.  If not, we wait ’til tomorrow for the regular team.  The balloon can stay in 12 hours then has to come out for one before the can put back in for another 12 max.  So we are buying time.

 In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease!
My Comforter, my All in All,
here in the love of Christ I stand.

***

Tis so sweet to trust in Jesus,
Just to take Him at His Word;
Just to rest upon His promise,

And to know, “Thus saith the Lord!

Oh, how sweet to trust in Jesus,
Just to trust His cleansing blood;
And in simple faith to plunge me
’Neath the healing, cleansing flood

***

He gives strength to the weary and increases the power of the weak but those who hope in the LORD will renew their strength.
They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
Isaiah 40:29-31

***

May the peace of God which surpasses ALL understanding guard your heart and your mind in Christ Jesus.
– Wendy P., 6:29pm Saturday evening

Just into Scott’s procedure on Saturday, the 24th, I get a text from a friend.  She wants to come and hang out with me.  I knew I needed someone who would halt me in my emotional tracks, not allowing me to sink.  Someone who would use sheer and utter logic, talking straight and distracting me with funny things.  Knowing this, I passed up the offer for friends to come prior to now.  Then I got a persistent “I’m coming” text from Beth, an excellent candidate for the job.  Later in the evening, three lovely ladies from the Zumstein family came bearing a cooler of fantastic food and excellent fellowship.

Around 9pm, Summer:  Scott’s nurse called… all is going swimmingly so far.  Excellent news, and in excellent company.

The IR team worked diligently on Scott during the procedure, doing what they could to prevent more bleeding.   The IR team was unable to do much to make things as stable or worry free as would have been lovely.  Their idea of using a glue of sorts to essentially seal off the varices at the root was unsuccessful since they were concerned when they saw his vessels led straight into his heart, instead of into his kidneys like 9 out of 10 would.  Another exception to the norm.  Another integral part of what makes his living through this so much more unfathomable, and seemingly impossible.  They didn’t want to risk getting the glue in his heart.

There was also no obvious base to his mess of re-routed vessels for the IR team to stop.  His portal system was like a bowl of spaghetti instead of clearly defined lines.  They were able, however, to “coil” off some of the larger vessels, in hopes of one of them being the culprits for the bleeds.

A bit later, I posted:  JUST GOT OF SURGERY.  He’s doing good, they say.  I get to go back to see him in a short.  Praise God. 

Scott’s body handled the procedure very well.  The IR doctors were hopeful that this procedure relieved some pressure so that Scott’s can hold off for surgery in the next couple of days.  A surgery that could potentially be a life/long-term fix.  This surgery, though very risky, is seeming right for all docs involved and is less dangerous than a lot of options we’ve heard in the past.

11:21pm, Summer: …We are not out of the woods yet, but thankful for a successful procedure that gave surgeons a better picture.  We continue to wait in ICU (thankful we were still here for this afternoons bleed!)!  Pray for no more bleeding!  They feel confident they can handle it.

Scott was happy to sleep that night, and I was equally happy to snuggle in beside his bed and rest as well, waking only to the occasional doctor visit.  By now, we didn’t worry about monitors or machines perpetually beeping in alarm.

Sunday morning, May 25th, Summer: We met with surgeon, who will work in the operating room with Susan Orloff, the best possible doc to be under right now.  We are praying Scott will stay stable until they assemble their team and map out the plan.  Next up: CT scan.  And more waiting.  Preferably without bleeding.  Here we go!

***

Things were happening so quickly since the beginning.

Our pastor Scott LaPierre had been wonderful to relay messages over Facebook to update folks, which became our number one way to communicate what was going on.  With the phone’s running out of charge after the center of the drama on Friday, and with such a large (diverse) family, the task of calling everyone was impossible.  By Friday night, we had not personally communicated what was going on with very many and so when there was a lull, I made contact with close family members – all who had already heard what was happening thanks to Sarah (who had been awesome enough to send out emails!), social media, and word-of-mouth.  We encouraged them to watch Facebook, as I wouldn’t be able to call everyone personally with each update.

We wanted to make sure everyone had easy access to all future updates, not just our Facebook “friends”, and so began the Scott Steenbarger Saga on Facebook.  Ironically (and thankfully!), most every single one of my side of the family all the way up to my grandparents are on Facebook, as well as most of Scott’s.  Unfortunately, a couple of mine have become more absent from our life.  Not wanting to exclude anyone from this experience, it only made sense to make something public.  It also proved to be incredibly helpful for my own morale to be connected so closely to those who love Scott & his story.  Little did we realize at the time that we set it up that it would become such a worldwide testimony of God’s amazing mercy and grace as well.

When I started the Facebook page, I remember specifically thinking: “Are we some of those people that have a Facebook page for their sick family member?!”  Figuring this whole disaster would be short-lived, I sort of brushed it off like meh, it’ll be short and uninteresting.  Yeesh.  My mistake.  I sure haven’t learned to stop thinking stupid things.

resting  25+ hours since last bleed!

resting 25+ hours since last bleed!

Back to Sunday afternoon, I posted: Resting peacefully. Other than a slight headache and wee clear-fluid yakking after drinking a quart of water for CT scan this afternoon, its been a fabulously uneventful day so far.  Hoping for more of the same!

So far I had been rock solid with my own morale for the most part.  God is faithful, and was holding me close and giving me peace that I had no ability to keep on my own.  I was thankful that so far a lot of what was happening to Scott was stuff that we had been semi-educated by over the years as a possibility.  And I couldn’t deny the impeccable timing to each piece of the story.  Scott needed me to be right there, supporting him and cheering him on.  Not freaking out.  I was doing alright.

Then Sarah called. Continue Reading »

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