Long Echo and Cardiac Visit Post Stent Placement

Kalvin had his first echo and cardiac appointment since having his stent placed in his coarc in January!  Stent  The morning started off a little rough.  Lots of traffic.  And a echocardiography room without a TV.  Meaning Kalvin would have to lay still for an hour without anything to  distract him.  Children's Department of Cardiology is under construction so the rooms are scarce and the new TV's are not connected yet.  They are there in the rooms,  but not hooked up.  A big tease for a seven year old to see the TV,  but not be able to watch it.  Kalvin was a trooper.  This is one situation when Kalvin was younger that would have made for a really long trying day.   As my mind drifted back in time to previous echos,  I was so thankful that Kal was older and that this was a bit easier now that he can be reasoned with.  Sometimes.  My heart went out to those younger patients who would be in that room later in the day.  With no distraction.  When everyone is on edge,  a bump in the road as simple as a non working TV,  can really feel like a mountain to climb.  A tall mountain.  Mt. Everest.

While we were waiting to begin the echocardiogram, the nurse came in and requested that she weigh Kalvin again.  Ahhh, the weight!  Yes, he has lost a lot of weight since our last visit in January,  I acknowledged. Weight Loss  I have to say,  I am quite impressed that everyone is all over his weight loss.  He has been doing great with eating again.  Well, he still wont eat cake which is just unfathomable to me.  He has gained six pounds and is at a perfect weight for his height now.  But he is still five or more pounds lighter than he was in January.  It is comforting that the doctors everywhere are on top of this and not letting it slip by.

Kalvin during his echo-here they are taking images of his coarc.  You can tell because they are way up by his throat.

The sonographer was wonderful.  She squeezed the gel onto Kal's chest and asked him a few questions.  He told her he liked having the gel on his chest because it tickled him.  The sonographer said she had never heard that before!  She diverted his attention by having him watch a different kind of "movie."  The movie of  "his heart."   He ate this up and so did I.  As the sonographer explained what each image on the computer screen was,   I knew this was going to be my opportunity to finally ask all the questions I have been afraid to ask in the past. 

Kalvin having his EKG.  The EKG was a challenge when he was younger.  Trying to keep him still.  Now it is easy peasy.

 

As the hum  (more like a roar) of the fan from the echocardiography played on in the background,  the sonographer began to explain to Kal that we would be in there for over an hour and that we had a lot of images to capture.  Panic set in.  For me.  Why so long?  Why so many pictures?  What are they looking for?  Is there a problem?

I see the familiar blue and red waves moving back and forth on the screen.  Immediately I think they look out of place.  The waves indicate blood flow.  The red and blue indicate the different direction the blood is flowing.  Why am I so panicked?  There is just so much time to sit.  And think.  In complete darkness.  In silence.  With the roar of the fan as the background music.

 

 

As the sonographer promised, she made the images into a movie for Kalvin and began explaining what we were looking at.  "The left ventricle squeezes and releases as it pumps blood to the body," she began. 

 

We met with Dr. Brown (Kal's cardiologist) and received great news.  The arrhythmia he was experiencing in his abdomen before the stent was placed in his coarc was now normal.  Normal?!   His heart function looked great.   I think the word "perfect" was even used,  but I may be imagining that.  Kalvin had a great conversation with Dr. Brown and we discovered that Dr. Brown also plays the piano,  like Kalvin.  What doesn't this doctor do?  He is amazing.  We are all set for another year (knock on wood).  What a great morning it had  become. 

 

 One appointment down and one to go.  We were off to get a CAT scan for Kalvin's leg surgery.  Leg Surgery  Dr. Kim wants to measure the damaged portion of his femoral artery and take images of his abdomen.  A CAT scan will show the artery in more detail than the catheterization or any other imaging machine.
 

 

 

In between the echo and the CAT scan we had some time to wait.  We always try to stop by and visit Kalvin's surgeon,  Dr. Pigula,  when we have extra time.  We still have not seen him in person since Kalvin was in the hospital the first month of his life.  First Surgery   We correspond via holiday cards and emails,  but I would love to see him in person and give him a big big hug... again.  He is responsible for so much of Kalvin's success,  yet we never need to see him anymore (knock on wood...again).  It is an odd feeling.  To have someone make such a difference in your life.   To be so thankful to that person for all they have done.  And then to never see them again. 


Kalvin in Dr. Pigula's office.  Leaning on his desk.  We missed the good surgeon.  He was away at a conference, but his assistant took this picture and emailed it to Dr. Pigula.  We will drop by again another day and hope to meet up with him.

 We mosied on down the musical staircase.  A favorite of Kalvin's at Children's.  We were headed off to have a CAT scan.  Kalvin's first.  Ever.  Anxiety began to rear its ugly head again.  The worry, "Would there be a needle involved?"

 

Kalvin checking out the mechanics behind the musical staircase in Children's Lobby.

 

What a Day At The Park Can Reveal About Brotherhood

Kalvin seemed to enjoy the park and its slides like every other two year old.  Until that fateful day when we took him to the "playground store" to purchase a swing set for our back yard.  He climbed up the big, big slide right away.  He sat at he top of the slide and yelled,  "Watch me, watch me!"

 

  Now these slides, the slides that are inside the store designed to sell pure exhilaration to kids,  must be waxed by the Karate Kid.  Kalvin, headed down the slide.  He zoomed by us at lightening speed.  Like a rocket passing in front of our eyes.  And he landed halfway across the store.  To say he was a little shaken up is putting it mildly.  Kalvin swore off slides for a long, long time.   To this very day he will do almost anything to avoid them.   At birthday parties,  when all the kids are climbing up the big blow up slides,  Kalvin usually tries to find something, anything, else to do.

Kalvin at 2 before we bought the big swing set.
 

Some of his "slide phobia,"  I know,  stems from his anxiety and his coordination disorder.  But really this fear of slides didn't rear its ugly head until that fateful day at the playground store.

Kalvin at 2 coming down his little slide.
 

 Before Finn was born, my pediatrician would continuously ask me when we were going to have another baby.  "It will be good for Kalvin," he would say to me. 

We knew we doted on Kalvin a little too much,  but every heart mom knows it is very hard not to.  Very hard not to have your world continue to center around that heart baby when it has for so long.  Especially, when he is your only child.

Dr. Cloherty would ask me if I was concerned about a new baby having  heart defects too.  I would assure the good doctor that concern over a heart defect wasn't the issue.  "We are trying,  Dr. Cloherty,  we are trying,"  I would mumble.  And it was true.  We were trying.

 

Most days,  Finn and Kalvin wrestle together.  Bicker.  Harass and torment one another like normal brothers.  Right?  But they also have their moments.  Moments of sharing.  Hugging.  Actually enjoying one another. 

 

Finn is a typical little brother in that he mimics all that Kalvin does.  And says.  He wants to be just like his big brother.  And that annoys Kalvin, at times.  But they also share a lot of laughs and giggles.  And when they do I think,   "Ahhh, this is what Dr. Cloherty was talking about."  

The laughter and camaraderie siblings share is like no other.  The best kind of medicine for the whole family.

 

And then there are moments when I see Finn actually leading Kalvin.  Coaxing Kalvin to try something new.  I witness Kalvin trying to mimic Finn.  Trying to walk on a sidewalk curb or climb a structure at the park the way Finn is doing.  And I admit, it breaks my heart.  And I find myself wondering if this is what Dr. Cloherty really meant by,  "It will be good for Kalvin?"

 

I worry about the day when Finn becomes obviously more coordinated than Kalvin.  How will Kalvin handle that?  I observe Kalvin watching Finn maneuver the stairs with ease now and wonder what he is thinking.  What is this noticeable coordination difference going to do to Kalvin's self confidence?  His self esteem?   Then we have a day at the park like the one we just shared and I know it is all good.  It is how it is all meant to be.

 

  They are brothers and they will build each other up.  Motivate one another to be better.  Push each other.  Propel one another forward.  They are brothers.  And then I know this is what Dr. Cloherty was talking about.  Together, they are the best medicine for all of us. 

The pictures tell a much better story:

 

Finn desperately wanted to go back to the "bumpy slide" park where he had gone with his babysitter.  So I obliged and we headed off to the "bumpy slide" park.  Kalvin wasn't so sure he wanted to come, but we bribed him with a game of baseball at the park.  When we arrived,  Finn bee lined it for the bumpy slide. And Kalvin followed.

There it is.  The "bumpy slide" in all its glory. 

 

 

It is made of rollers.  How cool!

 

 

Finn came down and went back up to coax Kalvin down the slide.  And guess what?

 

 

He did it!

 

 

And loved it!  Sort of.

 

 

A little climbing.

 

 

"Go Finn Go," we cheered.

 

 

And Kalvin was there to guide Finn.

 

 

Brothers.

 

 

And then I saw Finn darting off towards The Beast.  The big, big slide. 

 

 

And I looked up.

 

 

Way up.   And my heart.  Sank.  Will  Kalvin do this?   He has never climbed this high.

 

 

And Finn started to climb.

 

 

And look who followed.  Brother.

 

 

And they both kept climbing.

 

 

All the way to the top!  Now my heart starting beating rapidly.  Will Kalvin go down the slide?  Will he try and turn around?

 

 

He hesitated.

 

 

Yelled out.  And.

 

 

Finn came down.

 

 

And then look who followed.  Brother.

 

 

What fun.

 

 

Oh my.  He did it. Fun really isn't what I would title this picture.

 

 

Back up for some more.  And look who is in the lead.

 

 

The look on his face says it all.  .

 

 

He is totally stepping out of his comfort zone

 

 

And for this guy, just another day at the park.

 

 

Brothers. 

 

 

Life Is So Very Precious

A beautiful girl I was friendly with growing up and had the pleasure of seeing in recent years,  passed away this weekend.  She left behind her high school sweetheart who was also her husband and her four children.  Her life was cut short much too early.  It is sad and scary to lose someone suddenly.  When someone your own age passes away,  it stops you in your tracks.  It makes you really think.  This could have just as easily been me.  In this case,  it really made my mind also wander off  in a different direction.  Probably because of the way dear Sue was taken from us.  She was in the hospital having knee surgery.  I am told it was routine knee surgery.  We all know what I think of that word "routine".  I don't believe any hospital stay is ever routine so let's just she was in the hospital having knee surgery and leave it at that.  A few days later a blood clot went to her lungs.  She went into cardiac arrest.  She passed away.
 

It is hard for me not to think of Kalvin's upcoming surgery.  Is it absolutely necessary for his survival?  Is it worth the risk?  It is hard not to run through the "what ifs?"

It is hard to fully imagine the pain Sue's family is feeling right now and the loss they will endure forever.  Her three sons.  Her daughter,  her youngest and her only girl now motherless.  It is just too sad.  I can't wipe away the image of her husband kissing her goodbye and then sending her off into surgery;  thinking she would be home in a few days.  I wonder how I will be able to kiss Kalvin goodbye on June 27th  and not think of Sue.
 

 I wonder why.   Why would this happen?   And I think,  why not?   Bad things happen to good people too.   And then I think,  why not me?  Or Kalvin?   Surgery is scary.   I know Kalvin's  biggest fear is a needle.   He is happy to go to the doctor's,  even to stay in the hospital as long as we are with him and there are no needles involved.  If he only knew,  the needles are by far the least of his worries.
 

Just when I was warming up to the "summer of surgeries"  (June 27th and August 8th),  I find myself bulldozed over by fear, panic, and sadness.  I know we have to move forward with the plan for the artery stretching surgery on Kalvin's leg, but it just got a lot harder to digest.

 Please keep Sue's family in your prayers.
And hug your loved ones a little tighter.

Easing Anxiety With Each Game

Kalvin was playing street hockey with his dad when he got a ball in the nose.  An instant bloody nose.  His second bloody nose to date.  You can see the blood on his Bruins jersey.  His puffy nose.  His watery eyes.  So I guess it's official.  He is now a true hockey player.

 

 

Sports have been such a great distraction for Kalvin.  For his anxious mind.  Sports give him a lot to focus on.  The players.  The rules.  The talk shows.  He loves to watch [and play] hockey, baseball, and football.  Tonight I caught him watching fishing on NESN.

 

 

This is all new.  We only started watching hockey last year when Chris Kreider was pulled up from BC to play for the Rangers in the playoffs.  Kal was so excited to watch.  Kal was glued to the screen just waiting to see Chris' line skate.  His whole head would move as he followed Chris around on the ice.  Add a goal or two by young Chris and Kal was absolutely beside himself with joy.  I had never seen him so engaged and excited about something before.  Well, maybe Michael Jackson for a while.  It gave me such great feeling to see him so happy and so involved.  It was just good clean fun for the whole family to watch Chris soar and Kalvin right along with him.

 

Please note the sparkling purple slippers leftover from the Michael Jackson days.

 

This past fall, Lars and I were away for a weekend and my parents stayed with the kids.  It happened to be the weekend of the big Ohio State Michigan game.  A big event in my family.  Kalvin instantly became a Buckeye fan.  Not sure if it was the hot dogs or drinking out of a thermos while watching the game, but he was hooked.  And it helped that Ohio State won!  Then the Patriots followed.  Kalvin would plan all week for the big game.  This really kept him busy.  No one could know more about Tom Brady (and Gisele).  Kal would call grandpa during the games.  Several times.  They'd go over the plays.  Strategies.  Hoot and holler.  There was no turning back.

 

 

 

 

 Kalvin was devastated when the NHL season was delayed this year, but we made it to a Connecticut Whales game to watch Chris play.  It was great fun.  Chris even threw him a few pucks and a towel or two.  He was in his glory. 

  

 

And Finn enjoyed the popcorn.

 

Earlier this month we had the opportunity to skate at the TD garden.  Not sure who was more excited.  Lars or Kalvin?

 

For sure Finn was most excited about the food buffet.

 

 

 Now that the Bruins are playing...and in the playoffs.  Well, you can just imagine the excitement.

Kal went to his first Bruins game at the TD Garden.  It was right after the Boston Marathon tragedy.  Spirit in the Garden reached new heights.   Kalvin took it all in.   He insisted on buying the big bear claw and cheering madly with it.  Throughout the entire game.  Such fun.

Thanks goodness for DVR's so Kal can watch the second half of all the night games the next morning.  You know when he is up at 6 am.  Seven days a week.

We have been trying to figure out what has helped to ease Kalvin's anxieties this year.  They are still present,  but there has been a remarkable difference since January.  After the Marathon tragedies,  I noticed how Boston sports really helped unite the city.   Gave us something positive to focus on.  Preoccupy our minds for a few hours during a very stressful time.  We have always had tremendous spirit and pride here in Boston.  Well, obviously because we have the best teams,  but the spirit was never more passionate and united.  I started to think about Kalvin and his stresses.   I have to think sports have played a huge part in easing his mind.  Giving him something to talk to his classmates about.  Something fun to occupy his mind on a regular basis.  Sports really are just a great way for everyone to get involved.  Be a part of a team.  Lots of fun...especially when your team wins.

And now, as Kalvin says, "IT'S SPIRIT TIME!"

GO BRUINS!!
GO CHRIS KREIDER!!