Hope4Peyton

Crazy zany nearly all girl sleep over with pizza and late night movies:  $50

Having a quiet evening in a drafty private hospital room with your wife:  Priceless.

I said it a while back:  The kids are the key.  Tonight, my son proved me right.

In all of this, we’ve talked about the flickers of light/recognition/clarity/possibility/hope we see.  Tonight we saw a pretty big ray.

Friday night, thanks to a pair of incredible moms, the girls had a sleep over pajama party.  They had fun.  They got to stay up late and watch cool movies.  They giggled themselves into a tizzy.  They milked an imaginary cow on the kitchen floor.  At one point, Peyton had a pretty big emotional outburst of frustration.  Basically she let off some steam and a tree in my yard now has less bark.  It’s good for her to get that out.  She needed it and Sandi recognized that and helped her vent.  I’ll get her some one-on-one daddy time today.

So, while all of that was going on, I took Nathaniel up to the hospital.

Last night, I showed him the pillow incident, just trying to ease him in.  He liked it.  We talked about it some.

We drove up to the hospital Friday afternoon.  I kept asking him in different ways if he had any questions, or wanted to talk about anything.  We talked about how engines work.  We talked about what he wanted to be when he grows up.  This week it’s a surgeon.  We talked about what superchargers do to engines.  We talked about school.  He got to gas up the car.  We stopped and ate at Applebees.  Dinner conversation was light as well.  I warned him a couple of times that mom may not react to you.  I explained that the important thing is that she hears you.  So, when you go in there, just tell her you love her and are praying for her and can’t wait til she comes home.  Or words to that effect.  He’s a great kid, he really is.  He takes it all in.

The drive from the restaurant was pretty funny.  We sang parts of the “star trekkin” song and talked about the intricacies of our favorite video games.

When we pulled into the parking lot, he looked a little pale.  I told him to relax and to breathe, and reminded him again that if she didn’t respond to him, it was ok.

I was SO nervous about this.  I worried that she wouldn’t respond to him, and it would crush him.  The one thing he’s been thinking about for the past 25 days is his mom.  What if she just laid there?  What if she opened her eyes, but didn’t acknowledge him?  How the heck would that affect him?  I re-iterated it again when we got off the elevator.  I made sure he knew his presence was the most important.

Anissa was asleep when we came in.  We sat her up and started talking to her some.  She very slowly opened her eyes and looked at Dawn, then me, and then Nathaniel spoke.

He just said, “Hi mom.  I love you”.

I told him he should try louder.

He repeated it louder this time.

She turned to him, reached over, grabbed him, pulled him close, and kept kissing his head and cheek.  She stroked the back of his head.  She held him tight for a good 5 minutes with her left arm.  The whole time, she was looking at me and tearing up.  So were Dawn and I.  There was no randomness about that act.  It was an act of a mom who hasn’t seen her son in nearly a month, other than pictures.

We asked her if she minded sharing the bed with Nathaniel.  She did her best to scoot over and give him room.

All in all, we had maybe 20 or so minutes with her, before she passed out again, but what a 20 minutes.

When it was over, I walked Nathaniel down to the car so he and Dawn could go back to the pajama party.  He kept asking when he could come again.  He wants to help.

As soon as we get her someplace safer than where she’s at, the kids will be visiting regularly.  We just don’t know when we’re moving, or to where.

So, after all the excitement, I went back up to the room and spent a quiet night with the wife.  We didn’t do much, but that’s pretty much how we like it.

My grandpa used to say that on occasion.

He failed to mention the steel-toed boot wearing things that tend to kick hard.

Thursday was a good day though.

So, amongst other things, the van died.  The timing could have been better I suppose.  I turned a corner and it just stopped running.  I got it going again, limped to a parking lot, called AAA and got towed to a repair shop.  While waiting for the tow, I called to see if the other car was fixed yet.  Last week, someone graciously offered to fix my heater issue.  Unfortunately, intermittent problems are the hardest to find.  It wasn’t fixed, BUT, it is driveable, and better than a rental at the moment.  I can always “Fonzie” it for a while.

I did, however, wind up buying a lotto ticket.

I figure  I’m due.

The past few days have been fairly low compared to Monday’s fireworks.  We’re getting pressure to move on to the next facility.  The best facility in the area won’t take her because she’s not far enough along yet.  The second best facility in the area won’t take her because she’s too young.  They wouldn’t even give me a tour.  It goes downhill from there.

Basically, we’re having the same problem that we had before.  We are seeing activity.  The medical staff is getting mixed results.

Frustration is the word of the week.

Thursday morning, however, we got a little bit smarter.  The night before, Sandi had toured some of the suggested facilities, and she took her camera with her.  She still had it in her bag up at the hospital that morning when Anissa got active.  What she caught on tape was huge.  She was talking to Anissa, who realized that she was being recorded.  Anissa then reached over, grabbed for a pillow, couldn’t get it one way, got it the second way, and covered her face, hitting Sandi with the pillow in the process.  Another recording showed Anissa taking direction and doing activity on both sides of her face.

It might seem minor to you.

To us it was huge.  It showed awareness, problem solving, independent action and a whole mess of other things.  And before anyone asks, no I won’t youtube it.

Sandi then proceeded to show it to every person who came into the room.

We *THINK* their perception of Anissa changed again.

They saw progress.

Once again, the medical staff not listening to the care-givers.  This broken record really needs to stop.

So, we’re still in the hospital, in search of a sub acute care facility until she can handle 3 hours of therapy a day minimum.

We have had 24 hour spans where we have more activity than that.  Just not consistently.  Right now, the pattern is: GREAT day, sleep day, pretty good day, GREAT day.  Repeat as necessary.  Of course, it does appear that she’s recovering quicker after activity, and it’s only been a week, so not enough to learn the pattern yet.  We have felt twinges in her right leg.  She’s trying to move it.  She’s also starting to open her mouth at appropriate times to talk.  Still no sound though.  Still incredibly tired/weak.

I spoke to a friend last night who gave me some pretty good advice.  We’re basically at the point that the kids could help out more with Anissa, BUT, I need to do it right, and protect them as well, physically and emotionally.  I’ve been spoon feeding them updates.  The positive ones.  Trying to keep them somewhat updated and their spirits up.  We’ve been doing “good night calls”, which is difficult for an adult, let alone a child, but I want Anissa to be able to hear their voices.  My plan is to start with the oldest first and take him up one on one.  The drive should give us a bit to talk privately on the way there and back.  He’s seen the video, and had a few questions.  I’m hopeful there will be more, but you know kids.  If that goes well, we’ll try the middle one, then the youngest.

Technology being what it is, try buying a tape recorder in a store these days.  I bought a little boombox the other day with plans to record the kids at home continuously in various situations so she can hear “our home”.  When I got it home, I realized it wouldn’t record ambient sound.  Ok, no big deal.  I’ll just buy a tape recorder.  I want something I can leave in the room safely so that if it does get stolen, it’s a no big deal $20.  So, I went to Best Buy and explained what I wanted.  They tried talking me into a digital thing.  I told him I really wanted a tape recorder that can record ambient sound.  But you can do so much more with a digital recorder.  I realize that, but I want to record ambient sounds in my house with a tape recorder.  A digital recorder would be better for that.  Are you trying to hunt ghosts?

Um, no.

My wife had a stroke and I need to record my kids continually and not worry about the thing growing legs in a hospital.

Oh.  Um, we don’t carry those any more.  Try Radio Shack.

Apparently the art form that was making mixtapes is truly lost.

At home, the kids are holding up as best as they can.  I’m sleeping in 2 hour increments, and waking up every so often to check on the kiddos.  A great friend is coming over Sunday to help me put up some outside Christmas decorations.  I just want to give it more of a semblance of a festive look.  I’m hoping that will be a distraction of sorts for the kiddos.

Please pray for stamina and patience.  Anissa needs it.  I need it.  Those who are here with us need it.

Did I say Friday was a good day?

Monday was better.

We celebrated with homemade waffles at dinner.  Afterwards, I got to show off some of my card tricks to the kids, and even told them about one I pulled on my brother (thanks to Penn and Teller) 20 or so years ago.  It’s still funny, and he’s still trying to figure it out.

Peyton yanked out a tooth at bedtime.  The tooth fairy has already come.

So, the weekend had a little bit more activity.  Anissa’s sister spent the most amount of time with her.  Including getting the word from the neurologist that he thought Anissa would surprise a lot of people in this hospital.

It’s about time he realized this is Anissa Freakin Mayhew we’re talking about.

Sunday was a day of rest.  Anissa was in and out mostly.  As simple as it sounds, I actually got a hug from the wife Sunday.  I was stoked.

Been waiting almost 3 weeks for that.

Then came Monday.

She got a feeding tube installed.  I was hesitant at first, based on her progress so far, but, even if she were to be able to eat, she wouldn’t be able to eat enough to sustain a grown woman.  So, they rolled her into surgery for about 20 minutes and rolled her back out, groggy the whole time.

Why groggy?  Well, they gave her a bath at 3 AM.  Not exactly conducive to “quality rest”.

Shortly after surgery, the speech therapy girl showed up.  They did a swallow test with her on Saturday, and it wasn’t all that great.  Which is why they put in the feeding tube.  But, it’s a temporary thing, so I suggested she try it again.  We talked about ways we could improve/stimulate Anissa.  Earlier, we made half a laptop screen green and the other half red (for yes and no), but didn’t have much success with that.  We wound up trying a spoon of water.  Anissa swallowed it on command.  Next we tried pudding.  She swallowed that on command.

Swallowing.  That’s a big deal.

That’s a huge step forward.

Anissa was pretty tired from the late night bath, surgery, and speech stuff.  We figured she’d rest most of the day and be in and out like she has been.

Understand that the moments of activity that I’ve been writing about are small flickers of activity surrounded by long periods of waiting.  And waiting.  And waiting some more.

Physical Therapy showed up a little bit later.  Anissa was in a real deep sleep.  The therapist worked on her left side.  Anissa groggily went through some motions, responding slowly.  Then she woke up and started doing things she hadn’t done before.  Look up here and reach my hand.  Done.  Point your toes to the floor/ceiling.  Done.  Kick your leg.  Kicked.  The therapist said that 10 was the magic number we were looking for, so if you watch Sesame Street, 10 is the number of the day.

Anissa gave her a sarcastic look.  Head cocked, eyebrows furrowed.  Slight sneer.

That was the left side.

Up until today, that’s where all the movement had been.

Yep, I said up until today.

The therapist went over to her right leg and did passive movements, asking Anissa to push back.  Nothing.

Anissa looked exhausted.

They took a break and re-adjusted her in bed, moved her up a little, put a binder around her to cover the feeding tube.

She then raised Anissa’s arm perpendicular to the ground, held it by the wrist, supported it at the elbow, and asked Anissa to raise and lower her arm.

She asked if I wanted to feel.

I went over and held her arm the same way.  It was faint, almost imperceptible at first.  But, it was definitely there.  She was pushing and trying to raise and lower her arm.

After that, she fell asleep pretty hard.

I couldn’t stop bouncing.

The paralysis has been a growing concern of mine.  I’ve seen occasional twitches, but never more than once, and always out of the corner of my eye, so I haven’t really been counting that.

At dinner time, Sandi called and said Anissa was ultra awake.  We put it on speaker phone and let the kiddos talk to her.  She responded to each one of them right down to showing Peyton’s teddy bear that she sent up while Peyton was talking.

She blew them kisses.  Actually puckered.

She held onto that bear for over an hour.

Next up is the right leg, then her speech.

Your prayers are working absolute miracles.  She’s getting stronger daily.

Apparently my little undeniable force of nature thinks she’s ready for rehab.

Six years ago today, my little Peyton made her grand entrance, and the world was never the same.

It was brighter.

Today we celebrated Peyton’s birthday with breakfast, presents, Rockettes, dinner and cake, prompting her to say this was the best birthday yet.  Thanks to everyone who sent cards/presents and a big thanks for the tickets to the Rockettes.  The timing was impeccable on that one.  It gave my kids a well deserved distraction that they’ve been needing.

Ya know, if you watch the news, you get the feeling that this world is a horrible place.

Have a catastrophe or 3 happen to you, and you see the absolute beauty in this world.  There are GREAT people in it.

Please understand, I simply don’t have the time for thank you cards….but each gift, thought, prayer, comment, etc. has been received and appreciated with much love.  There have been some amazing, inspiring things happening, and a lot of times I’m at a loss for what to say, other than thank you and I can only pay it forward.

To that end, Anissa absolutely loves the Twilight series.  She wrote about it a few months back in here somewhere.  Some friends, new and old, came up with a “twilight inspired idea.”  They’ve come up with shirts for Team Anissa and all proceeds are coming to us.  Check it out here.

So, Friday morning arrived with MUCH anticipation.

Thanks to friends and family, since all this began, Anissa has only been alone in the ICU for one night.  It was Wednesday night.  She had essentially been stable, and was consistently resting through the nights.  I just wanted to make sure someone she knew was there as she was waking up, so she would have some comfort.

They extubated her Thursday night, and my aunt thankfully stayed with her.  Just as an extra precaution to make sure she could keep her airway clear.

When I got up to the hospital Friday morning, Anissa had a mask over her mouth to force oxygen at her.  She was looking fairly aware.  She was also acting fairly ticked off.  She was pushing us away when we’d get close.

She reached up and pulled the mask off violently.

They brought in some tubes that went under her nose instead.  She was ok with that.

I started talking to her.  Trying to figure out some form of communication.  She just stared at me, angrily.

I’ve been known to ask an inappropriate question or two in tense situations.  It’s just our way of dealing with stress.  It lets the other know things are going to be alright, and has been known to diffuse situations for us in the past.  So, I rolled the dice a little.  I told her she probably couldn’t talk, but could you try to sing a few bars.  She actually sarcastically snorted at that.

I asked if she was mad.  Big nod yes.

I asked her if she was mad at me.  Big nod yes.

I asked her if she was mad at me because she was in the hospital bed.  Big nod yes.

I asked her if she wanted to see someone else here.  Nothing.

I held her hand and said squeeze if you hear a name of someone you want to see.  I rattled off a few names.  Nothing.  I started naming off the kids.  Big squeeze.

I got the feeling she was doing more than just hearing me.  She was actually comprehending things.  So, I started telling her about things.  I said the kids were safe in school, that I paid the bills, that Peyton had broken her wrist, that Rachael was named student of the month.  I told her I had talks with Nathaniel’s teachers about his progress report.

Basically, I told her I had everything under control.

Her expression changed from anger to surprise.

The nurses came in to do a few things so I left the room for a little bit.  Angry isn’t really a strong enough word for what I got from Anissa.  I made a few phone calls to family and friends and got what I think was some pretty good advice.  Maybe she’s confused about what’s going on.  Tell her what happened.  She’s trapped in there, disoriented, in and out, confused and can’t communicate.

When I got back to the room, she was still pretty ticked.

I got in real close to her and gave her a kiss.  She turned her head away.  I told her she was in the ICU of the hospital and that she had another stroke.  She turned her head back to face me.

I told her some of the highlights of the past 3 weeks.  Not too much.  I didn’t want to overwhelm her.

She softened some and held my hand.

We were interrupted because the nurses came in to transfer us.

Yes, I said transfer.

We’ve moved out of the ICU people!

We’re in a normal room.  Of course there’s a bit of fear of leaving the comfort zone of the ICU nurses, but this is a HUGE step.

When she got down to the room, we resumed our conversation.  I played some sounds of breakfast that morning with the kids.  I told her they were doing fine.

I played some music from her favorite show, Glee.

A little later, I asked if she wanted to see a video.  She nodded yes.  So I played one.  I played the “Faces of Childhood Cancer” for her.  She had watched it over and over again when she made it the first time.  As it was playing, I was talking to her.  Do you remember making this?  Nod.  You helped all of those beautiful kids when they needed it.  You helped give them hope.  You didn’t let them quit.  They’ve all been praying for you and walking with you.  They’re not going to let you quit.  It’s ok to be mad, sad, laugh, cry, you name it.  Does this suck now?  You bet.  But, I’m here with you.  You know that.  I’m not going anywhere.  The kids are praying for you and they miss you.  This is just one more thing for us to overcome.  The damage that’s been done can be fixed.  It’s going to be hard.  We’ve got a lot of work to do, but we’ve also got a lot of help.

When that video ended, I asked if she wanted to see a different one.  Big nod yes.  I showed her the “A Mother’s Love” video.  As it played, I told her all of those moms are with you.  You’ve helped them when they were down.  They’ve been helping you.  They’re going to help you now.  It’s going to take a lot of work, but we’re in this together.  We can do this.  We’ve got a lot of help.  It’s just one more thing.  Then I asked if she wanted to try to work.

Big nod yes.

Ok, try to chew.  She moved her mouth.  Try to cough.  Cough.  Want to try to sit up?  She moved her arm over to the rail to try to push off.  She didn’t get all that far.  Still EXTREMELY weak.  Try to talk.  Mouth opened.

She’s in there.

I’ve just got to figure out how to get her out.

This morning, she was not as aware as she was yesterday.  I think that’s how this is going to go.  There will be ups and downs, and she needs lots and lots of rest.  She’s in and out a lot.  I’m pretty sure she’s getting most of the conversations when she’s in.

The thing about the brain is that they simply don’t understand a whole lot about it.  Some folks have left some book ideas on here in the comments section.  I’ve got some reading to do.

I don’t know that I want to be disheartened by “experts” who tell me things that can’t be done at this point. I’m really more interested in possibilities at this point.  I do, however, want to know the best methods and durations to push her on.

All of you thick-skinned, loud voiced people who I’ve been holding in reserve…your time to help may be coming a little sooner than I anticipated.  There will be times that she needs to be pushed beyond her limits, we’re not there yet, but I think we are getting there.

On Monday, we’ll be re-evaluated by a couple of different rehab centers.

I’m letting her get some rest this weekend and not pushing her too hard. Her sister covered today so I could do Peyton’s birthday.  She got some pretty good communication from her too.

I’m just hoping the evaluators see it.

I met a guy when I was doing a summer job in college.  His big plan was to travel to the Sistene Chapel and find a chair and stare at the Mona Lisa all day.  When I asked him why, he said he wanted to get as close to Leonardo as possible.

I liked his idea.  He was excited about it.  It sounded intelligent, and probably used it to impress a girl or two.

I just didn’t have the heart to tell him he was going to the wrong place.

I’ve often wondered if he ever figured that one out.

So, Anissa didn’t wind up being extubated Sunday.

I did however get to tour another hospital for a different reason.  Peyton broke her arm Saturday on a fall down the stairs, and told me she was going to suck it up and be tough.  I’m wrapping my kids in bubble wrap from here on out.  We did get in some minor comfort shopping complete with an early birthday present and popsicle.

Or Monday…

Instead they wheeled the ventilator back in.  She had struggled to keep her airway clear and the thought was that maybe she was laboring too hard.

Or Tuesday…

Instead, I got to tour several other facilities for the next phase of her care.

Or Wednesday…

Instead, I had a severe heart to heart with my wife.  I told her that if she wanted to go, that was ok too.  I had it covered.  But, if she wanted to fight, I was behind her all the way and this was just one more thing to overcome.  It dawned on  me that I had never considered that as a possibility.  Maybe she didn’t want to fight.  She’s too good of a person for everything she’s been through.  Maybe this was it.

By far, the hardest conversation I’ve ever had to have.

That night, someone sent me a link that the St. Pete Times ran a story on us.  I clicked on over to see what they had done.  It was essentially a copy of something Anissa wrote about on the 3 year anniversary of Peyton’s diagnosis.

“Romans 12:12.

Rejoice in hope,

Be patient in tribulation,

Be constant in prayer.

I can’t say that it comforted me, that it filled me with the knowledge that everything would be OK and confidence that we could do this.

But that verse spoke to me and clarified that although there was nothing I could do for my daughter’s body, I could do these things … and God would handle the rest.

Although I will never tell you that my faith keeps the fear at bay or my anger under control, it’s what has kept me from giving up and allowed me to get out of bed every morning (well, most mornings).

It’s been what allows us to keep laughing, keep living through it. ”

It just felt like she was reminding me where we’ve been.  It was encouraging, and I needed that.

On Thursday, she chose to fight harder.

She was very responsive to the medical staff in the morning.  Fairly alert and able to consistently follow commands.  I asked the various doctors to get on the same page with regard to her treatment.  I kept getting differing stories from each specialist.  They agreed, and she was finally extubated at about 5:30 pm.  We’re taking a risk that she won’t be able to clear her airway.  But, there’s also risk crossing the street.  Sometimes you’ve got to run before you walk.  So, tonight, I got to hear my wife make a sound for the first time since that last phone call.

It was a fairly strong “ahem”.

On my way out last night, I stopped by the chapel.  It’s a tiny little room with a little pulpit and a bible on it.  The bible was opened to Mark.  The verse in big letters center-pieced on the page was Mark 5:36 “Be not afraid; only believe”.

I really think that getting her out of the ICU where the kids can come visit are the next main key.  I’m going to have to be cautious, but, they are going to be an integral part of her recovery.  Nothing could stand between my wife and her kids.  I truly think they will give her the biggest fighting chance to recover.

Understand folks, this recovery process is going to be a while.  A large part of that recovery will be up to Anissa and how much interaction she gets from family and friends.  She will need consistent coaching, pushing, pulling, etc.  So, for all of you folks that are lining up to help out, THAT’S when we’re going to be needing you.  Right now, we’re focusing on getting her more alert and aware.  That takes rest, comfort, coaxing, love, and prayer.

Right now, the closest person that I know of that defines “serenity” is with her.

And we’re being patient in tribulation.