Hope4Peyton

There are a lot of balls in the air, and I just needed a moment or 3.  Bear with me.

If this were Hollywood, she’d have woken up Thanksgiving night in a flash of white light, and skipped out of the CCU while whistling “It’s beginning to look a lot like Christmas”.  If this were Hollywood, I’d have more hair, be 4 inches taller and 50 pounds lighter.

It’s not Hollywood though.  People don’t just wake up from comas.  It’s a gradual process.

I’m going to steal a line from my favorite tv show that barely was:  Firefly.  “When you can’t run, you crawl. And when you can’t crawl, when you can’t do that…you find someone to carry you.”

Oh come on.  Admit it.  You wish you too had this much useless sci-fi knowledge in your head too.  Go check out who played Chewbacca some time.  You’ll see a familiar name.  Anissa actually got me a signed autograph from him for my birthday a few years ago.

You all have helped carry me.  I’m so thankful for that.  Her phone keeps jiggling on my hip.  It’s been a constant reminder that folks are thinking and praying for us.

Thanksgiving Day came and passed.  There were some short moments of absolute clarity with her.  Natalie got to witness some.  Angela got to witness some.  I stayed at home during the day to spend Thanksgiving with the kids.  We caught the Macy’s parade.  We watched the Lions lose, prompting me to break out my Barry Sanders dvd and show the kids the best running back of all time.  We waited.  I couldn’t take it any more and headed up to the hospital to see my wife before the turkey arrived.  The waiting was absolute agony.  Natalie was positive she had communicated clearly with Anissa.  I wanted to be there.  I had to be there.  So, I hugged my kiddos and told them mommy was waking up.  White lie?  Maybe.  Natalie saw what she saw though.

I got to the hospital and Anissa was apparently exhausted.  Her eyes were open, and she’d move her head around some, but wouldn’t respond to anything.  It was clear she was tired, but wouldn’t sleep.

One of Anissa’s online friends, The Jennster, set up a time for everyone to think/pray/focus on Anissa.  9 pm EST was the time.  I got word of it late, so the best I could muster was a facebook posting of it.  At 9:03, she closed her eyes and finally got some good sleep.

The pattern has been that we’ll get pretty good response after a long rest for Anissa.  Unfortunately, on Friday, it was like she regressed.  I waited up there for a bit, and there was no recognition.  My aunt flew in.  Anissa’s sister, Angela, drove over.  At some point during the day, I was showing her a picture of the kids.  I asked her if she wanted to hold it.  She did.  She held it up in front of her face for a while.  Then I took it away, turned around to hang it back on the wall, turned back in time to see her grab the leads that measure her heart rate.  She grabbed hard and pulled.  We restrained her again.  I’ve been saying that she’s going to extubate herself soon.

On Friday afternoon, someone new showed up.  A sales person for a hospital they are considering transferring her to.  In listening to the woman speak, it sounded to me like it was a nursing home.  That hit me hard.  I didn’t care for that.  She’s making so much progress.  I kept asking about rehab, and she kept steering the conversation away from that.  I couldn’t think of any questions to ask her other than, “would you send your husband there?”  I should’ve asked if she got paid on commission.  The answer I got was a well practiced answer.  I could tell she’d practiced that in the mirror, over and over.  I didn’t believe her.  I want rehab.  Physical, nuero and occupational.  The good thing is that the kids could visit her if she were in a facility like this.  The scary thing is would she respond to them.  Think about that for a moment.  How do you think my 11, 8 and almost 6 year olds would respond if the one person they’ve been hoping to see for the past 2 weeks didn’t know who they were?

Crushed doesn’t quite describe how I left the hospital Friday.  Then I got a call from my dad and step mom.  They reminded me that I needed to be her advocate.  Well, duh.  Of course I do.  Yeah, I had gotten so caught up in the 5 minutes of clarity with her every day that I had lost sight of that.  Thanks for that Pat.  Then it dawned on me that the medical staff isn’t seeing what we’re seeing.  They’re seeing me as a family member who’s seeing what’s just not there.  The reality is that she’s been improving daily.  Physically, her left side is very quick, strong, and accurate.  Her right side still hasn’t moved.  Her blood pressure is under control.  The ventilator is out of the room.  She’s able to manipulate a ring from finger to finger without dropping it.

On Saturday, I woke up with a new plan:  No matter how much we wanted to communicate with her, we wouldn’t.  We needed her to get her rest.  We needed her to do her dog and pony show for the nurses and doctors.  We needed them to see what we were seeing.  When Anissa had her eyes open, I explained that to her.  I explained that I was going to go spend some time with the kids, and that I desperately needed her to sleep.  All day long.  Who doesn’t want a nap-filled Saturday?

We got a new nurse on Saturday as well.  When she came in the room, we had some polite conversation, and I explained my plan/line of thinking with her.  I also introduced my wife to her.  I said the woman before you can move mountains.  The nurse was so sweet, and offered some words of encouragement.  We talked some about all the pictures in the room.  She’s a budding photographer and wanted to know who took the pics.  I said Anissa had.  She wanted to know some geeky details like did we use some software to manipulate them.  I said that the real professional is Anissa.  Get her to wake up and she’ll gladly tell you how it’s done.

So, I left the hospital, Angela stayed with her.  The kids and I put up the Christmas tree.  We went out to Cracker Barrel.  We played I spy.  We shopped for Peyton’s birthday.  We froze a little in my car because the heater went out the other day.

Angela sat up there and read a book.

We all waited.

This morning I got a text saying she’s VERY awake.

More importantly, she’s aware, somewhat, and responded to commands.

Even more importantly, the medical staff saw it.

The nursing staff was apparently all sorts of giddy.  Angela talked to the neurologist, asking if she’s still considered in a coma.  At this point, she’s no longer considered in a coma.  There is still a lot of concern about speech and her right side, and she has a very high fever.

They’ll be extubating her today.

I have absolutely no clue what is next.

One thing is for certain, God is showing us through this.

I started shaving my head several years ago when my wife said the infamous phrase, “honey, your hair has started migrating…”  I haven’t shaved my head since this all started.  I haven’t really looked in the mirror since this all started either.

I did today.

Apparently I have some gray hair now.  Go figure.

So, last night, some friends, new and old, stopped in.  It was extremely good to see all of them.  We talked about the situation here.  We talked about what was going on in their lives, and at work.  Was a nice bit of escapism.  It meant the world to me.

Anissa was a bit more active.  She’s responding to things a bit more.  She even turned her head, slightly, to acknowledge other voices in the room.  There have been more signs of encouragement.  Things like hold up one finger, and she does.  It comes and goes, not consistent enough, yet.

Peyton’s still having issues, but today got to do a few cool things with grandma.  She’s definitely in need of some one-on-one daddy time though.  I think I’ll make it a point to start doing a meal out with each one of them every couple of days.  Nothing major, but, just something so they each get their one-on-one.

That was Tuesday night.
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Tonight was something a little more.

More than slight movement.

More than slight eye re-focusing.

More than kicking her foot.

Understand that I try to look at her activities and actions as objectively as I can, but sometimes it’s difficult when you want something so much.

A little bit ago, I headed down to the cafeteria to get a cup of coffee.  The junk they have up here just doesn’t cut it.  When I came back in the room, her eyes were open and she was staring up at the pictures I have of the kids.  This is common.  When her eyes are open, that’s when we get the best response, but doesn’t always mean she’s seeing us.  Hard to explain really.

Anyway, I came back in the room, and said my common line of, “hey hey hey…look who’s awake”.

Her eyes looked at me, I think.  It was one of those, “did you just see that” moments.

I leaned in and put my head on the armrest and smiled at her.  Her eyes smiled back at me a little, again, I *think*.

I said very softly, “can you hear me?” as I reached for her hand.

A nod.

“Can you understand me?”

She grabbed my hand, shook it, and opened her eyes wide in what I interpretted as, “Yes I can hear you ask me something else”.

I got about 5 minutes of what I would consider the best communication since all this started.  I showed her pics of the kids.  I told her they were safe.  I told her I loved her and that we were getting through this together.  She was nodding at the appropriate times, squeezing my hand, and following me some with her eyes.

The thing about faith is it’s not about what you want.  It’s a confidence that God won’t give you any challenge you can’t handle….you just don’t know what that limit is.  ‘Nissa and I talked about this when Peyton was first diagnosed.  For the first time, there was a very real possibility of a poor outcome for one of our kids.

There is, however, a certain calm that overtakes you when you take your hands off the wheel of life and let God do the driving.

Six days ago, I prayed for lots of things.  It was one of those moments of weakness, when the weight of the world was feeling rather crushing.  What I got was this thought:  “Touch her where she’s hurt every day for the next 7 days.  Things will work out.”  Every day, I’ve been coming in and touching the back of her head, her right arm, and her right leg.  Every day, I’ve been doing a mental count down, sometimes out loud, drawing weird looks from Natalie, sometimes in my own head.

Tomorrow, Thanksgiving Day, is day 7.

If tomorrow comes and goes and she still hasn’t woken up enough to be considered out of the coma, I’m ok with that, because of the path she’s on.  It’s just another day in this whole ordeal.

Understand though, my wife hates being late.

An old friend found the finished video I was watching on her itouch the other day.  Thought I’d share it with you all.

Patience.

Dedication.

Enduring faith.

Unstoppable hope.

Strength.

Determination.

Perseverance.

Grace.

An advocate.

Courageous.

Devoted.

Compassionate.

Conviction.

Generosity.

Committed.

Tenacious.

Inspirational.

Extraordinary.

THAT is my wife.

I’m having a rough go of it today.

The Wednesday after this happened, I prayed for the strength of Samson, the wisdom of Solomon, and the courage of Daniel.  If I get a couple of others in there, I’ll be Shazam.

So, this morning, I woke up needing some encouragement.  I was looking for a particular post Anissa did about me.  I just spent the past 20 minutes or so scrolling around her website and can’t find the one I’m looking for, but what I did find was laughter.  It was like scrolling through a scrapbook, and I could hear those words coming out of her mouth.

Yesterday they turned the breathing machine down to its lowest setting.  A good sign.  For about 10 hours, she was essentially breathing on her own, and was just exhausted at the end of it.  There were some moments of encouragement.  I’m 100% positive she saw us and was trying to communicate with us.  She kept her eyes open for a good 2 hours.  We THINK that’s because she was uncomfortable and unable to sleep.  We gave her some meds for that.  I was hoping for fireworks.  I told her that we were going to get up.  1-2-3, get up.  She tried.  Lifted her head, arched her back and pushed with all her might.

Not yet.  Not even close, but the encouraging thing is she’s trying.

Today, I’m making videos of the kids to take up.  They want to help.  Peyton’s having the toughest time these days.  She misses her mom.  She used to sneak her way into our bed and crawl in between us.  As a parent, you sometimes turn a blind eye to things…this was one of ours.  Last night, I got to hold onto Peyton for most of the night.  Not as good as her mommy, but it got us through.

The waiting is the hardest part.  Can’t get that chorus out of my head for nothing.

My mind has been going through every possible alternative.

Saturday was bill day, because having the power turned off now would really kinda suck.  I think I figured out her filing system and found some paperwork.  Natalie stayed up with Anissa most of the day.  The shifts are beginning.  Some folks came in and some folks begrudgeoningly left.  The cavalry arrived in the form of an SUV filled with familiar kids and two oh-so-sick-of-being-in-that-vehicle adults.  My girls thought it was Christmas when they opened the door.  Apparently, the squeals eminating from 5, 8 and 9 year old girls actually CAN shatter glass.  Who knew?

Nathaniel’s best bud came along…they were cool about it.

The fort they built is ready for Ragnarok.  But then again, compared to these kids, Ragnarok is for sissies.

Ok, so homefront taken care of:  check.

I’ve decided to stop looking at the readouts from the cat scans.  They don’t tell the full story.  The scans keep reading no change or mild improvement.  They are done by different radiologists, so it’s a game of telephone with them.

We’ve also backed off some in how and how much we’re pushing her.  At first we were talking and poking her as much as we could.  My common phrase is, “you fight when you can; rest when you need to.”  We’re letting her rest more now, and not pushing her to her full limit yet.  We’re seeing progress.  A fair amount of progress.

Saturday she opened her eyes when some friends were up.  She would squeeze her hand when asked.  We’re not sure how much she’s seeing, so we’re asking her simple questions.  Saturday night, they were messing with the brace that holds her breathing tube in place.  I’m pretty sure she was in pain because the therapist left it in an awkward position.  Anissa made a fist and tried to reach up.  The restraints held her back, and I put my hand on hers.  She swatted it away and made a fist again.  I tried to wiggle my finger inside her hand and she used her thumb to “eject” my hand from inside of hers.  Coordinated movement!  Might sound simple, but that was extremely encouraging.

On Sunday, the real fireworks began.  I brought up the pillow cases the kids used the night before, so she could smell her babies.  I printed off big pictures of the kids from our last round of yard work.  Anissa’s a shutterbug, so she likes to take these LONG breaks and take pictures.  I played some of the videos she’s made over the years.  There were 2 that I kept playing for her.  The background music of the first was “Bring the Rain” by Mercy Me.  Beautiful words and oh so fitting.  The other one was Superwoman by Alicia Keys.  I don’t know if she ever finished making that video.  It was one for all the cancer moms we’ve met over the years.  It was great to see the faces of all the other parents we’ve gone through struggles with.  It was like they were there with us.  I’m pretty sure it wasn’t a final draft because she was listed in it twice.  Who knows, maybe that was just foreshadowing on her part.

When she opened her eyes Sunday, I would hold the pictures of the kids in front of her.  I asked her to squeeze if she could see the kids.  She squeezed.  Hard.  For each one.  No favorites there.  I held her hand up in front of her face and asked her to open it.  No response.  I held my hand in front of her face and made a fist.  She made one.  I said open it, and opened my hand.  She opened her hand immediately.  There was a hint of a tear in her eyes.  There was also a bit of recognition I think.

She’s working so hard.

She’s fighting.

Please keep praying.

On a side note, later in the day, someone called me and was asking about something that I just didn’t want to deal with at the time.  My response was, you can ask my wife, she’ll be awake on Thursday.

We’re going to see a miracle folks.

I just know it.

When I first started this site up several years ago, it looked a little different.  I band-aided together a couple of software packages and made it work.  I would watch the little counter go up shortly.  1 hit here, 4 hits there, etc as friends and family would trickle in.  It was something to do to pass the time waiting for news.

It was lonely.

Yesterday we had over 35,000 hits and drove our friend’s server into the ground!  THAT’S the kind of impact my wife has had over the years.  That’s not counting all the social media sites she’s gotten into.  I keep her cell phone on me because it jiggles when she gets an email for some things I just can’t figure out.  It jiggled all day.  I like it because it’s a constant reminder that people are thinking of us.  I’m going to keep it that way for a while.

I asked for someone to lean on….apparently we have the world.  And somehow that includes her favorite teen crush of all time….the karate kid, Ralph Macchio.  I’ve still got to figure that one out.

You ALL inspire me and hold me up at times.  It kind of feels like that moment in Rocky….where he ran alone at first, then the entire city of kids ran behind him later.

THANK YOU ALL!

So, Friday was a day of waiting.  We decided that maybe we were pushing her too hard and would just talk “around” her, instead of aggravating her.

They ordered another cat scan, after Natalie pushed hard for it.  Sometimes with a medical staff, you’ve got to drive them.  We learned that with Peyton, and it served us well.  Plus with a weekend coming up, they never order tests over a weekend unless there’s a significant change.  Three day weekends are a challenge to wait through.  Bless her for pushing for that.

No news is generally a good thing, so we waited rather impatiently all day long.  We waited and talked.  We talked about the kids.  We talked about things Anissa’s done.  We talked about current events.  We laughed some, we cried some.  Mostly, we waited.  It was that polite conversation you do when there’s something you’re dancing around.  Another friend came up to stay for a while.

Anissa got a bath, new sheets, had a picc line installed.  She gets a little cranky when they mess with her.

Then, last night, around the time they do a shift change, we were talking to her, focusing on her, asking her to open her eyes.

She did.

She kept trying to keep them open for a good 35 minutes.  She also tried to sit up some.

We don’t think there’s any recognition yet, but we do think she’s hearing us.  I keep telling her simple phrases like, “I love you”.

These are baby steps, but very encouraging baby steps.

The cat scan finally came back shortly afterwards:  No degradation, slight improvement.

We’re getting there.

On the home front, the girls are doing remarkably well.  I’m concerned for Nathaniel.  He’s my oldest and a tenderheart like his dad.  He’s old enough to understand what’s going on with his mom, and he’s scared/nervous.  On the outside, he’s being his normal goofy self.  Even got in trouble for doing another kids homework for money the other day.  On the inside, he’s hurting like no other and doesn’t want to show it.  I’m very thankful that his best friend in the whole world gets up here today and will be here all week.  The non-estrogen support will be welcome.  The lego battles will be monumental.  The adventures in the back yard will be better than they’ve ever been.  The forts will be huge, and they will wage war on everything…including that fear in the back of his head.