The Queen B

Ruining My Mojo

Y'all.

If I give you an update on The King, it kind of ruins the whole saga thing.  

But.  If you insist.

He's good.

Seriously.  He's great.  Tomorrow, we go back to Little Rock for his 6 week check up. I cannot even believe this week will mark 6 weeks since his surgery!  

I was getting ready to take his picture to show you his progress, but I became distracted by the shirt he's wearing...

Really.

And he says that is peanut butter on the back wheel.  I'm not convinced.

Here's a photo of his noggin this morning.

 

Doesn't it look great?  

If you look at him closely, his head is a shaped a bit differently than it was before.

In the mornings, he looks like a beluga whale.  During the night, the fluid in his brain comes through the part of his skull that hasn't closed yet.  It eventually drains, but it is kinda weird.

He still has a lot of restrictions...no driving, bending over, lifting anything heavier than a milk jug, climbing stairs, etc.  He's really hoping some of those restrictions are lifted tomorrow.

Thank you so much for your thoughts & prayers on his behalf.  

Now.  I'm not telling you anything else.  

Spring Break 2010-Part 14

Sorry I've been MIA for a few days.  It's The Princess' last week of school.  Enough said?

Also.  I want to be super clear about something.  I so appreciate your comments.  SO APPRECIATE THEM.  Especially when writing this type of saga, it is very encouraging to receive your sweet messages.  However.  Many have mentioned my faith.  Y'all.  My faith is so nothing to be on a pedestal.  

Serious.  

Remember this? What about this? This? And for goodness sakes THIS? If you even begin for a moment to think that my faith is extraordinary, spend a little time perusing the Keepin' It Real section.  

My faith is totally and completely ordinary.  Maybe less than.  God gave me the grace to handle the last 2 months of my life.  Just like He would do for you.  

It's nothing that I did without Him.  

Please keep that in mind while you (if you?) continue reading about our journey. 

***

As soon as the nurse told me that The King did, in fact, have a colloid cyst and would need a full craniotomy, she told me that I could spend a minute or two with him in pre-op.

The nurse pulled me aside and said that I was the only one authorized to go back with him. If I wanted to take anyone else back to see him, it was my call.  I immediately asked The Princess to go with me.  I also asked The King's mom.  

The nurse had stressed to me that we would only have a minute or two with The King. On the way to pre-op, I stressed to both of them that we had to make it quick.

His mom was able to visit with him for a few minutes, then she went back to the waiting room.  The Princess spoke with him and gave him a kiss.  I just told him how thankful I was that he'd be having the craniotomy.  I knew that was what he wanted to happen.  

We were about to head out of pre-op when a nurse came into his cubicle and said The King's surgery had been pushed back a bit, and we'd be able to stay a little longer.  

I thought about going to get a few more family members from the waiting room to come back, but The King said he just wanted to hang with The Princess and me.

We didn't talk a lot.  We just sat.

The King was a little loopy.  

It was kind of weird seeing him with out the unicorn.  

An anesthesiologist came in and talked to us.  There would be 2 anesthesiologists in the operating room with him.  There would also be another specialist (can't remember who) who would constantly be monitoring the communications from his brian to his extremities.  

It was about this time that I realized he would be on a ventilator.  I know that is typical, but I hadn't really thought about it. 

It sent me close to the edge.  

I had to immediately give it to God.  He reminded me of all that The King had survived and every detail that He had orchestrated on The King's behalf.

Soon, one of the nurses who would be in surgery came in to introduce herself.  She told me that they would let me know when they began the operation. She said they'd communicate with me every hour or so after that.  She said to only expect a message like, "things are still in progress".  

It was time to let him go to surgery.  I felt such peace.

Back in the waiting room, we gathered in a circle and prayed.  

Several people went to the cafeteria to eat after that.  I just couldn't leave until I knew they had started his surgery.  

About an hour after The King went back to the operating room, his surgery began.  

I couldn't eat after that, either.

We received an update an hour later that things were still progressing.

The time in the waiting room wasn't stressful.  It was pretty relaxed.  We talked and laughed. 

The next hour mark came and went without an update.  I kept looking at my watch...hoping that we'd hear something.

About 30 minutes later, I looked up and saw Dr. Krisht and his entourage heading straight for me.

I jumped and ran right to him, never realizing that many friends and family were looking at one another in fear.  They were certain that the only news that Dr. Krisht would be giving us, in person, after 2.5 hours of surgery would be bad.

To be continued...

Spring Break 2010-Part 13

As I was resting on the couch in the wee hours of Thursday morning, I had some serious prayer time. I spent a lot of time preparing my mind & heart for whichever surgery we would be facing.  

I knew that The King would never truly be satisfied living life restricted.  He is, if you haven't picked up on this, an adrenaline junkie.  He loves everything maxed out, on the edge & pushing the limits.  Though the parasite would supposedly be the better of the two diagnosis, I just couldn't get comfortable with it.  

God made The King to live his life to its fullest.  He wired him with the desire to get the most out of every experience.  I know that God can do anything He wants to do and it would be for the best, but in my heart...I just didn't think that was what we were facing.  

Ultimately, though, I prayed that His will would be done.  Whether the parasite or the cyst, we would be confident that God was in control.

There was another part of my little talk with God that was more difficult.  

A bit of history...Years ago, after The King and I had suffered a few miscarriages and were pregnant with The Princess, we willingly told God that though we would be thrilled and overjoyed to raise The Princess, we knew that she was His.  Those were not words uttered lightly or without serious consideration. 

The night before surgery, I felt a similar emotion.  I told God that being The King's wife is the greatest honor He could ever have afforded me upon this earth.  When we married, we completely became one.  He is truly my other half.  But...and this is where it gets tough...my love for and trust in God is greater than my love for and trust in The King.  If God would receive more glory for The King's death, then I would trust that He knew more than I knew.

I can barely type those words now.

But I meant it.  And I felt such complete peace.  

However, I knew that if God would receive more glory by The King living, then I would not ever stand in the way of what He had planned for him.

Does that make sense?

Y'all know I've had my fears.  And worries.  And fears.  This past year, God has shown me that He is bigger than anything my mind could come up with.  He's shown me that if I will put my trust in Him, the blessing is so much greater than ANYTHING I could imagine.  

If God saw fit to allow The King to survive not only this crazy tumor/parasite, but this surgery?  I knew...I KNOW...He has some amazing plans for The King's life.  I want to be The King's biggest supporter.  His greatest cheerleader.  His best friend.  I want to be with him every step of the way.  No matter what that might look like or where those steps might take us.  

One of the greatest lessons that I learned through this...most especially on this night before surgery...was that if I believe that God is in the middle of the good, then I have to believe He is also in the middle of the bad.  

You can't pick and choose when He is Lord of your life.  He is or He isn't.

We arrived at the hospital Thursday morning.  I went straight to The King's room.  His shunt had already been removed.  He was preparing to get an MRI and then head to the operating room.  

I told him that I had prayed that if it were the parasite, we would both be content living life a bit calmer.  

I think I said something about the best dang chess players in the universe.

But then I told him that if it were the cyst, we would rejoice.  We would know that God intended on him living life full throttle and I would be at his side for every stinking thrill ride he could find.

He told me he'd prayed the same thing and come to the same conclusion.  We were both totally at peace.  

I saw Dr. Krisht walking down the hall and he smiled and said they were ready to get the show on the road.

Only I don't think that's how he said it at all.  That was just my interpretation.

I gave The King a kiss and told him I'd see him soon.

The nurse told me she'd come tell me as soon as she knew which procedure they'd be doing.  

After about 30 minutes or so, she came out and knelt before me and told me that it was the cyst and they were prepping for a full craniotomy.  She had tears in her eyes.  I was thinking Woo Hoo!!  Bring it on!!  I knew that God was confirming to me that The King was not only going to live, but he was going to live big.

To be continued...

Spring Break 2010-Part 12

Wednesday night was tough.  

We tried to spend as much time as we could with The King.  It was so weird...on one hand, we're trying to keep his spirits up and act normal.  On the other hand, my husband was prepping for brain surgery.  Not normal at all.

Late that afternoon, I was in The King's room with Nannie and a good friend (PeepOne, for those of you who read mom's blog).  Our favorite nurse came in and began to explain some of the details of surgery.  The detail that crushed me...he wouldn't be able to have any pain medicine when he came out of surgery.  They would need him to stay awake through the night, and the best way to do that was for him to be uncomfortable.  That totally broke my heart.  

The Princess spent some time alone with The King.  They laughed and cried.  I totally want to know what was said, but then I kind of don't.  There's only so much a mom's heart can take.

And hello?  I had my own major conversation to deal with.

I spent some time alone with The King after everyone had finished visiting with him. I crawled into his bed and just cried.  I told him how much I loved him and that if anything happened to him during surgery I would take care of The Princess and La P and we would be ok.  I told him that if he came out of surgery different than we hoped, I would take care of him.  

He had a list for me, too.  He shared all the things that he wanted me to do if he didn't survive the surgery.  From work things to personal things...he had thought through every detail.  

It was so incredibly difficult to hear.  

I kept telling him to zip it.  He had to tell me, though.  I think for him to be able to go into the surgery peacefully, he had to tell me.  

We talked through our life.  We laughed and cried.  We left nothing unsaid.

It was horrible and wonderful.

I hated to leave him that night, but I knew he needed to rest.   Just as I was telling him goodnight, he held my face in his hands and wouldn't let me go.  He was just staring.  

I asked him what he was doing, and he said, "Memorizing.  Just in case I'm not able to see your face again."

It was nearly impossible to rest on Wednesday night.  Jason had to go back home for a work situation on Tuesday and was coming back Thursday, so our friend, Kara, stayed with Lacey, The Princess and me.  Kara & Lacey tried to force a half of a sleeping pill down me...I fake took it.

Thursday--the day we'd been waiting for--arrived too soon.

To be continued...

Spring Break 2010-Part 11

On Monday morning, the doctors felt that The King's surgery would probably be on Tuesday.  

Mentally, we tried to prepare.  It was totally weird, though, not knowing if we were dealing with the cyst or the parasite.

The best part of Monday was that Shannon came to visit!  It was so comforting having her...and all my friends...there to support us.  

Tuesday came and went with no surgery.  We did, however, make a plan for surgery on Thursday.

The neurosurgeon still felt strongly that we were dealing with the parasite.

Of course, the infectious disease doctor felt strongly that we were dealing with the cyst.

Wednesday began like most of the other days, but soon began to feel more intense. We learned more information about what either surgery would entail.

The first thing that would happen would be the removal of the shunt (aka unicorn) from The King's head.  He would then have to have another MRI to determine if we were dealing with the parasite or the cyst.  

The King could not have an MRI until the temporary shunt was out of his head.  The bolt in his head (yes, that kind of bolt) was metal and metal does not mix well with the MRI.  

We began praying that the MRI would clearly show one or the other.  

If it showed the parasite, then a permanent shunt would be installed.  It would drain the fluid down through his neck and into his stomach.  The parasite would eventually be killed by the antibiotic, but the risk of removing its carcass/wigwam/cocoon would be too great.  

Apparently, doctors don't like to delve into your brain if it's not necessary.

The procedure would be much less invasive, but there would be some long-term issues.  The King would no longer be able to snowboard, scuba dive, participate in contact sports or jump out of an airplane.

All things he loves.  

Except for the airplane thing, which he totally wants to do.

All the more reason to install the shunt.

If it showed the cyst, then the doctor would immediately begin a full craniotomy. He would remove a portion of his skull and then begin cutting down into the middle of his brain to remove the cyst.  

If you put a finger on your nose and a finger on your ear, his cyst was would be where your fingers would intersect.  Seriously.  The middle of the brain.

Dr. Krisht did not feel that The King was a candidate for the endoscopic procedure. The King's cyst was sitting on top of 3 really important things that control really important stuff.  Like, memory, vision & muscle control.  If he were to even "bump" one of those important things, The King would lose the function of whatever it controlled.  The tiny camera of the endoscope just made it too risky.  The doctor wouldn't be able to see anything that was around the camera--just what was directly in front of it. 

Dr. Krisht did feel that the craniotomy would be much less risky.  Even though it was a very delicate and more intricate surgery, his confidence in his abilities was so incredibly reassuring. 

We asked him how many craniotomies he'd done.  He does 10 to 15 each week.

Remember how the UAMS doctor had done 30 in his career?

Yeah.  I know.

The permanent shunt surgery would take about 2 hours.  The craniotomy would take 4 to 6 hours.  

The recovery period for the permanent shunt would be about 4 weeks.  The craniotomy recovery period would be 8 weeks.

The risks of the permanent shunt surgery were relatively minimal.  The risks of the craniotomy were more serious.  Any time you, you know, move the brain (!) there are some serious risks.  

The risks that I'd been told were possibilities were temporary (or permanent) memory loss, temporary (or permanent) vision loss and temporary (or permanent) muscle weakness.

As Wednesday progressed, I spent a lot of time praying and thinking.  

What would I do if The King came out of recovery and didn't remember me?  How would I care for him if I remembered every detail of our life together and he remembered nothing?

Would he love me if he had to get to know me all over again?

What would I do if The King could never see my face again?  If he never saw The Princess grow into a woman?  Never saw La P come home?  Never saw her sweet face without the tumor?  

So many things were racing in my mind.

Late that afternoon, I was able to spend some time alone with The King.  He told me he wanted to have the craniotomy.  Even if it was the parasite.  He didn't want to live his life restricted.

I became a teensy bit upset.  I'd spent my day wondering if he'd recognize me and he's worrying about parachuting from a plane?

He asked one of the surgical nurses if the craniotomy was an option for the parasite.

She quickly informed him that it was not an option and it was not his decision to make.

Major relief for me.  Major frustration for him.

To be continued....

  

Spring Break 2010-Part 10

The arrival at St. Vincent's brought a new measure of hope that we were making progress.  It had now been 6 days since the onset of The King's troubles.

(I kept thinking back to the original neurosurgeon saying that his surgery would have to take place within a week to keep from getting an infection.  He was on a pretty strong antibiotic, but I was still a little concerned.  Our doctor friend came to check out The King for himself, and assured me that everything was looking good.)

We were aware that the doctor whom we were planning to see at UAMS had moved to St. Vincent's, but were not 100% sure that we would be seeing him.  We just knew that we would be having the option of the endoscopic surgery.  

When The King first became sick, we were given the name of Dr. Ali Krisht by several friends in the medical field.  He is known to be one of the best in the world and is at St. Vincent's.  We weren't originally able to see him because the hospital in New Mexico did not want to transfer to a lateral hospital... they needed to transfer to a higher level hospital.  I don't even know what that means.  I just know that UAMS qualified.  The doctor who resigned from UAMS had trained under Dr. Krisht and is also held in high regard.  He was our 2nd choice and was at UAMS.  

I know that you don't really care about all of that now, but it will be cool later.  

Upon being accepted at St. Vincent's, we were patients of Dr. Krisht. Remember, The King didn't arrive at St. Vincent's until 9:30 p.m. on Friday night. Well.  Dr. Krisht dropped by around 11:00 p.m. to introduce himself to The King.  

Seriously. How nice is that?

He told The King to rest and he would be back to discuss things with him on Saturday morning.

He did return on Saturday morning and asked The King some questions and shared his thoughts after studying the CT & MRI.  Dr. Krisht was not confident that we were dealing with a colloid cyst.  He did not feel that it "looked" quite right.  He wanted to to do a little more research over the weekend.  

As he was leaving The King's room, he turned and asked, "You haven't been to Mexico recently, have you?"

I've only been to Guatemala 7 times in the past year.  Does that count?

Dr. Krisht said that we might be dealing with a specific parasite instead of a cyst. If that was the case, the craniotomy would not be necessary.  He would have a permanent shunt placed in his head and be on whatever antibiotic kills a nasty parasite in your brain.  

Since surgery definitely wasn't going to happen over the weekend, most of our family went home to take care of stuff there.  My mom, Jason & Lacey stayed with The Princess and me.

The weekend was very low key.  It was relaxing and somewhat restful.  The King kicked back with NCIS and 427 Redbox movies.  He was sort of in his ICU element.

To be continued...

Spring Break 2010-Part 9

Are you wondering if this will ever end?

We arrived in Little Rock about 12:20 a.m. on Wednesday morning.  The King's dad was at the airport to pick us up.  

The King and Jason were taken by ambulance to UAMS.

We arrived at the hospital around 12:45 a.m.  I really don't remember too much about it... I was going into my third night with no sleep.  

The King's mom and my dad and stepmother were waiting at the hospital when he arrived.  They had seen him roll by, but the hospital wouldn't let anyone back while they were getting him processed.

We were finally able to see him for just a few minutes.  Once I knew he was settled, I just wanted to go to sleep.

Our arrival at the hospital on Wednesday began several days of waiting.  The King was able to see lots of family and friends.  I know they were all so comforted to see him.

From the minute we arrived at UAMS, I had a bad feeling.  I can't really describe it, other than it felt very oppressive.  There was a lot of tension in the air.  

I didn't communicate as well as I could have with our families.  I inadvertently hurt people's feelings.  It was a horrible few days.  I felt that everything I said and did was wrong.  I had become used to my total focus being on The King.  Lacey & Jason had dealt with all the details.  All of the joy that I had felt in New Mexico was completely gone. It felt as though things had become less about The King and more about my failures.

In hindsight, I should have been more thoughtful. I was so tired.  I felt as if I was failing as a mom, a wife, a daughter, a daughter-in-law... But as The King's wife, I should have done a better job.  For him.  

You know that verse about satan prowling like a roaring lion, looking for someone to devour?  I was an easy target.  The first part of that verse says to 'be self-controlled and alert'.  I wasn't.  I always thought that verse referred to willingly being available to be devoured, but now I don't think that's what it means at all.  I think we have to be aware that when we are weak...even through circumstances beyond our control...we have to constantly be in prayer for our protection.  Plus, God had been so glorified by The King's survival and our joy.  I'm sure the lion was ravenous.  

I can only imagine how different things might have been if I'd been praying for my actions and reactions as I prepared to travel home.  

After waiting for more than 24 hours and having NOTHING happen, we found out that the doctor whom we were expecting to see...had resigned.

He'd left his job.  Like, during our flight.

So we were in limbo.

UAMS did not have a doctor available who could do the endoscopic procedure.  The doctor who we'd been reassigned to did not give me warm fuzzies.

He told us that The King did not need to have the endoscopic procedure.  He needed to have the full craniotomy.  We asked the doctor how many craniotomies he'd done, and he said about 30.

I didn't know if that was a lot or a little.  I just knew that UAMS felt wrong.  

The King was growing a little frustrated.  He was having to obey the rules of ICU (read:  bedpan) even though he felt normal.  He was flat on his back.  The drain in his head was so sensitive, if he scooted in the bed...even an inch...the nurse would have to come in with a yard stick attached to a level and re-level his bag o' brain fluid. 

I'm certain he could sense that things outside of his room were less than ideal.  

We did have a great nurse at UAMS.  She's totally meeting us for dinner this summer.

Lacey took their boys to their grandparents on Wednesday and then she came back. She and Jason and The Princess and I had a 2 bedroom hotel room at a place designed to host patients' families.  

Wednesday night and Thursday night were both very emotional for me.  Though I'd slept a little on Tuesday night, the stress of everything made it difficult to sleep after that.  Going to bed without The King was nearly impossible. About the time my head would hit the pillow, every worry and fear would enter my mind.  I began sleeping on the couch.  It was a good time to cry.  I tried really hard to not cry in front of The King or The Princess.  Nighttime was definitely when I found myself most vulnerable.  

Several of my friends visited in those first few days.  It was great to see them.  They were so supportive.  And they brought chocolate.  

My mom also arrived from her South Africa trip sometime toward the end of that week.  It's always good to have your mom around when things are in crisis!!

Friday brought some good news.  We found out that the doctor who we were originally to see had moved down the street to another hospital.  We asked to be moved there so that we could have the option of an endoscopic procedure.  

There was a lot of paperwork and politics, but finally...on Friday at 9 p.m...The King was taken by ambulance to St. Vincent's Infirmary.

To be continued...

Spring Break 2010-Part 8

Tuesday was a logistical roller coaster.

The insurance company's denial began a crazy series of phone calls and faxes trying to get things rolling.  

We had to find an air ambulance company that would be willing to come get The King and deliver him to UAMS in Little Rock.  The plane had to have the equipment to monitor his cranial pressure.  

I was pacing and stressing and pretty much about to lose my mind.  The King was oblivious to it all as he watched NCIS.  

Have I mentioned The King's strange hospital fascination with NCIS?  For 17 days, he managed to find an NCIS on every hour.  Bizarre.

Another blessing...Jason's career is in logistics.  He was totally in his element.  A phone on each ear. Emails flying.  Interviewing air ambulance companies.  Arguing with insurance companies.  Filing appeals.  

I was trying to play along.  With tears.  Jason finally told me to sit my rump in a chair and let him make the arrangements.

Except he didn't say rump.

And it made me laugh.  So I sat in a chair and watched NCIS with The King.  

(I think he and The King high-fived.)

We finally narrowed the air ambulance selection to 2 choices.  We ended up going with a plane from Mayo Clinic in Minnesota.  Their plane was a fully functional ICU room with an ICU nurse and paramedic on board.  It would be there at 7:30 p.m. to "package" him and they would plan on leaving New Mexico at 9:00 p.m.

The only issue?  The money had to be wired before it could be scheduled.

We're talking serious money.

I could get the money, but it would take more time than I had available to get him booked.

So again...I called Nannie.

Before you think I'm Greedy Greta, let me share something...I do not ask for money. The only reason I asked for her help was because my husband's life was, literally, on the line.  The King had huge tears in his eyes when I made that call.  He knew I was stretching so far out of my comfort zone and he knew I was doing it for him.  

My Nannie was incredibly generous and kind.  She never hesitated.  She immediately got the wiring process started.  She and Jason worked together and had it done within the hour.

I'm forever grateful and will pay every last cent back to her.  (She can leave the interest off, if she wants...:)

After that, we began making arrangements for the charter to pick us up at 9 p.m., as well.  

There was a moment where I realized that I didn't have my flying pills.  The ones that allow me to, you know, get on a plane.  And that would be on a big plane.  On a commercial plane.  Not a tiny, itty bitty plane.  I chose to ignore those thoughts for a while.

Jason & Lacey took all the kids to a bouncy place.  They sent me a text video of The Princess and the boys having such a fun time.  I so appreciated the words with the text..."she so needed this".

She did.  She needed to laugh and play.  It made my heart smile.

Late that afternoon, one of the nurses came into our room and asked if she could talk to us for a minute.  She told us that we were the talk of the nurses station.  She said they'd never had a family who'd laughed so much and been so joyful in the midst of a scary situation.  She wanted us to know that we had been a blessing to all the staff.

We had been a blessing?

We had been so blessed by the care and concern of their staff.  

That day, the Texas/New Mexico neurosurgeon came by for "just a visit--not professional" and hung out for a bit.  We talked politics with another neurosurgeon. We've since had the nurses call to check on us.  

Our stay in New Mexico could have been scary and overwhelming.  Instead, it was fun and joy-filled.  We had some great times of fellowship and prayer.  We grew a friendship. 

Our marriage was strengthened.

As happy as we were to be moving The King for surgery, we were all a little sad to leave.

Weird, isn't it?

Around 8, an ambulance crew and the flight crew came to The King's room to "package" him.

I really can't say that enough.

He was "packaged"...

Anyway, The Princess and I told him we'd see in him in Arkansas and headed to the airport for our own flight.  

We arrived at the airport and found the charter people.  We told them a bit of what our week had been like.  She pointed to the plane next to us and said that was The King's air ambulance.

I got the biggest lump in my throat.  

That was the plane in which my sweet husband would be flying home.

However.

The plane?  

Tiny.

Super small.

Like a can of biscuits.

I sat in the back and looked out the window.  I saw The King's ambulance pulling next to his plane.  Jason walked over to our windows and waved.  Lacey was up front getting the boys settled.

I texted Jason and said something like, "GET ME THE HECK OFF THIS PLANE IT IS SO SMALL AND I'M GOING TO DIE".

He responded, "You're fine.  Pray with Lacey.  She'll help you."

Within 5 seconds, Lacey came to the back of the plane and said, "Oh my word.  This plane is so small and I think I'm going to be sick."

Wonderful.

She did pray with me and she did help me.  We were both trying to be positive for each other, I think.

It was a 2 hour flight.  The kids ate everything on the plane and then fell asleep.

Lacey and I had great conversations about life and faith and blessings and struggles. Before we knew it, we were about to land.

The pilot told us that The King was right on our tail.

To be continued....

Spring Break 2010-Part 7

About 5:30 on Monday morning, I started texting, emailing and calling a few friends to be praying.  Jason had sent an email to our church family on Sunday night, so I knew there were already many people praying.  He had, of course, called The King's family and my dad as soon as things became serious.  

My mom was still in South Africa, and I had trouble getting connected with her.  I finally sent a text to her phone that said "Emergency".  I'm all about drama.

I sent Shannon an email to call me when she woke up.  She did call and we talked and she prayed with me.  She also gave me some great advice...get a notebook and write down everything I was told by anyone at the hospital.

(I always travel with a notebook because I'm a dork.)

Her suggestion was so practical and important.  I can't tell you how many times I have referred back to things written in that notebook.

I had several emotional conversations with friends and each one, though very difficult, encouraged me greatly.

My last call was to The King's mom.  I had been dreading that call.  She and I have a great relationship, but that was her son.  As a mom, I knew how scared she must have been.  I knew that there were a million things I needed to tell her, but none that would take away her pain.  

My pain was barely controllable, and I knew if I heard her lose it, I'd be done.  I couldn't afford to go there again.

We had a sweet conversation and I was comforted by her.  I hope she was comforted by me, as well.

Jason, Lacey & the boys were in a connecting room, and soon I heard them up and moving.  I woke up The Princess and we got ready and left the hotel.

Arriving at the hospital that morning made everything feel so real.  

I was going to see my husband in ICU.  With a shunt in his head.  Because of a cyst in his brain.

We could only have 2 in the room at a time, so Jason & I stayed with him much of the morning.  We laughed a lot.  

Like, probably more than anyone ever in the history of ICU should laugh.

From the bags of brain fluid and pee to the The Unicorn--nothing was off-limits for a joke.

The more we laughed, the more normal The King seemed.  

When he would talk on the phone to someone who was worried, he would spiral down a bit.  He became stressed.  He acted like a sick person.  

Late that morning, I decided that we would keep him laughing.  If I only had a short time left with my husband, we were going to spend it making great memories.

I needed The Princess to remember him laughing.  I needed to remember them laughing together.  

Medically, he was stable.  At some point during that day, one of the neurosurgeons mentioned that The King was a candidate to have the cyst removed endoscopically.  

That sounded like a great idea to us.  The risks of a craniotomy were enormous and the endoscopic procedure was much less invasive.  

However, nobody at that hospital did the endoscopic procedure.  

Our relocation became necessary at that point.  It also limited the number of places to which we could be transferred.  Apparently, a patient can only be transferred to a level higher hospital.  

Getting a local air ambulance was proving difficult.  But, the biggest hurdle came when our insurance questioned our need for the air ambulance.

There was no way he could ride in a car with the shunt.  A commercial flight was out of the question....hello, cranial pressure.

The insurance company's reason was that they'd already paid for an emergency flight (with the helicopter) and they only pay for one flight.  So...?  What is one supposed to do when one needs to transfer with a shunt in one's head?

Our case manager at the hospital worked diligently to communicate with the insurance company. 

Monday afternoon, Jason, Lacey & the kids drove back to Colorado to pack up our stuff.  We had a week's worth of groceries, all our rented ski equipment and 2 vehicles.  Very overwhelming.  I cannot imagine how much work they had to do in just a few hours.

God so provided for us.  Some of our friends were skiing near Durango, which was less than an hour from our rented house.  Without hesitation, they offered to drive our vehicle back.  They also took our skis back for us.  Completely above and beyond.  Completely.  I am so grateful.

Sidebar:  The ski rental people were great.  They were located an hour on the other side of the house.  They initially said they would only refund if we took the skis back to them that day.  After Jason worked on them a bit, they agreed to let the friends in Durango bring them back at the end of the week.  Very kind.  The people whom we rented the house from were a bit less helpful.  We had spent one night there (sans hot water) and they would not consider refunding any money.  They said they'd keep us in their prayers, but couldn't help us.  I wasn't upset for us, just for Jason & Lacey.  It wasn't their fault the vacation was wrecked, yet they lost a nice chunk of change.  The end.

We began looking at options for The Princess and I to fly back around the same time as The King.  Only one person could fly in the air ambulance.  The Princess was uneasy with The King and I flying together in case something went wrong.  

Enter the sacrificial lamb.

I asked Jason if he would fly back with The King.  It was very hard to know that The King would be flying without me, but I knew that I couldn't do anything for him and I could do something for The Princess.  

I sort of hated to tell Jason that he was flying in case they crashed. 

He never hesitated.  From the beginning, he told me that he'd be honored to do anything I asked.  So amazing.

I couldn't ask Lacey to drive back by herself with 4 boys.  Especially after all they were doing for us.  

So I did what I do in times of crisis.  I called my Nannie.

Nannie has access to a private plane and had offered it to me.  It would hold 7. There were 7 of us.  

Around that same time, the friends who were supposed to join us on vacation called and said they'd decided to reroute to Santa Fe so they could come to Farmington at the end of the week and drive Jason & Lacey's car back home.

Isn't that amazing?

We have been blessed with incredible friends.

Monday night, we still had no answer from the insurance company.  I knew we needed to get moving since the shunt could only be in his head a week, but I had no control over the insurance company.  

I spent Monday night making lists of everything I needed to do, who I needed to call, things to take care of at home, etc.  I didn't get any sleep, but did feel like I'd accomplished something.  

I was feeling good on Tuesday morning.  I just knew that this would be the day we would head home.  As I was walking in the hospital, though, The King called to tell me that insurance had just refused to pay for the air ambulance.

To be continued...

Spring Break 2010-Part 6

We made our way to ICU to wait for the neurosurgeon to visit with us after the shunt was installed.

Is installed the right word?

About 15 minutes later, the neurosurgeon came out and told us that the shunt was installed and the pressure in his brain was over 4 times what it should have been.  

In fact, when they drilled the hole, brain fluid shot across the room.

Sorry.  It did and I had to tell you about it.

The King felt instant relief.

 

The neurosurgeon explained a little more to us about what was going on in his brain. He felt that The King had a colloid cyst that had grown to the point of blocking the ventricular drain in his brain.  

Basically, your brain is like a tire.  Except for the air in the tire would be fluid in the brain.  Too much is bad and too little is bad.  The tube that was blocked was keeping the fluid from draining, which caused a build up and eventually led to the hydrocephalus.  

And really.  Your brain is nothing like a tire.

Where was I?

The cyst would have to be removed quickly.  The temporary shunt did not need to be in his head more than a week.  Infection would be likely to set in after that point.  The doctor suggested we take him closer to home for the surgery.  If there were complications or if rehab was required, it would be better to have him home. 

The doctor was semi-retired and actually lives in Texas.  He just flies to New Mexico to work 10 days each month.  He would be leaving the following morning.  He was so comforting.  We were blessed to have him at that hospital that night.  

I asked him how we would get The King home.  He said the only way was air ambulance. 

We got to go see The King and he was pumped about his new hood ornament.  

The Princess started calling him Unicorn.

He was so upbeat and positive.  Just like before.  (Major relief...really didn't like the crabby)

We told him good night about 1 a.m. and headed down the road to a hotel.  I got The Princess tucked in and proceeded to stare at the wall for the next 4 hours.

To Be Continued...