Pre-Op Visit for a Cath Lab Baby, Only My Baby is Now Eight

We headed into Children’s Hospital for Kalvin’s pre op appointment.  We still have not met with nor spoken to the Interventionalist Radiologist who will be performing his surgery.  Our first conversation with the Good Doctor began by the doctor introducing himself as, "The doctor that didn't call you back." 

Hmm, don't know quite how to take this comment/statement.  I guess, just "smile and wave."  Don't want to aggravate the man who's performing the surgery on your son's femoral artery.  Especially a few days before the procedure.  Best just to take a deep, deep breath and think of all the amazing things Children's Hospital has done for our family thus far.

It was a long day at Children's.  Finn came along for the excitement (plans were switched at the last minute).  Finn seemed to think we were at an amusement park.  He thoroughly enjoyed himself.  The musical staircase being one attraction.  The lights hanging from the ceiling another. The coloring pages, white boards and all the friendly people we met along the way were more than enough to keep Finn completely entertained.  After all, this was one of Finn's first trips to Children's Hospital.  And since Finn wasn't looking at any needle pokes,  it only makes sense that this day would seem grand from his eyes.

 

 

Kalvin spent the morning worrying about one thing, and one thing only.  The needle that would draw his blood.  He insisted on having a numbing cream patch to help take away some of the sting from the needle prick.  He was a trooper.  He only cried before the stick.  The anxiety leading up t o the needle is always much worse than the actual poke.   He watched the needle go into his arm this time and then, declared it was easy!  He felt much better watching the needle than just blindly waiting for the prick.  Who knew!

Kalvin proudly displaying his numbing cream patch. 

 

Kalvin after the blood draw, proudly displaying his little band aid.

What we learned at this particular pre-op visit was what I was most fearful of. The doctors don’t know if they are going to be able to increase the flow to his left leg using angioplasty.  At all.  They may not be able to do anything during this procedure or they may be able to make dramatic improvements .  They won't know until they are in the artery poking around.  Not really so comforting. T he artery may have been completely severed at three months old and therefore, not allow a wire to fit through it at all.  But we won't know if we don’t try.  Why we switched "plans" is in this past post here.

An interesting theory we heard from the doctor is that every baby who undergoes a catheterization procedure most likely has some artery damage.  But in almost all the cases, there will not be any damage to the leg itself or even any symptoms.  Ever.  So Kalvin's case is very rare.  The case where the symptoms showed up right away.  We knew the left leg was much skinnier than the other at one year old.  And then shortly thereafter, we knew one leg was shorter than the other. More about Kalvin's initial leg damage is in this post here.

We go in tomorrow, Monday, July 29th to try and widen the left femoral artery in a complex angioplasty procedure.  We pray the Good Doctor is able to make improvements that will help restore Kalvin's leg back to what it once was.

If you look closely, you will see Finn's little feet behind Kalvin. 
Kalvin thought he was being so funny trying to stand in front of Finn for the picture.

If not, well then we will have to come up with a new plan.  Fingers crossed.  Kalvin is so aware of all that is happening.  He is so ready for his leg to be "normal" and I am not sure how he will handle the news if this procedure is not successful.  I am not sure how open he will be to future surgeries to address this same issue.  He seems ready to move on from here.  Positive thoughts people, positive thoughts please.  You can read more about Kalvin's femoral artery damage here.

The boys are always captivated by the ball drop display in the lobby.
I have mentioned the chiming noise it makes in past posts here.

When Life Hands You Lemons

When life hands you lemons...you make lemonade.  We were at a party today and someone asked my husband about Kalvin's upcoming surgery.  I heard my husband breifly explain what was happening.

The person turned to me and smiled and said, "I asked him about it, he didn't offer it up as a topic."  As if my husband runs around talking about Kalvin's leg and or his heart.  I guess you have to know my husband and know how little he ever talks about Kalvin's medical background to appreciate the story, but I will go on.

It just hit me that this person wasn't really listening to what Lars was saying and wasn't really interested.  It made me think, "Why am I always so interested in other children's health.  Why do I want to know every last detail?  Is this because of what we have been through with Kalvin?  Do all other parents with chronically ill children find themselves deeply interested in hearing stories of other children with chronic issues?"

I am not sure.  If I didn't have a child with congenital heart defects, would I still be so interested?  I cannot answer that, but I guess I would not be able to relate to the other's stories in the same way I do now.  Things for us have not been that bad.  But I do know how they have changed me.  Changed my husband.  Changed out extended families.  Life is not the same.  Does not mean it is worse, does not mean it is better.  But it is, all we will ever know. 

I guess that it alters my thinking and my perception.  I know how blessed we are.  I know how tough things are for others.  I can only try to offer prayers and blessings to others.  I have mentioned a dear sweet boy to you in past posts, Will.  His father is a truly inspiring parent.  Please take a moment and read this.  And once you do,  I hope you will take a moment and send some positive thought and well wishes their way.  Will has recently undergone brain surgery.  How is father answers his nine year old boy's questions is inspiring.  His words will offer you hope.  They will leave you speechless and counting your blessings.  I promise.

It Breaks Your Heart

“[Baseball] breaks your heart.

 It is designed to break your heart.

The game begins in the spring, when everything else begins again,

and it blossoms in the summer,  filling the afternoons and evenings,

and then as soon as the chill rains come,

it stops and leaves you to face the fall all alone.

You count on it, rely on it to buffer the passage of time,

to keep the memory of sunshine and high skies alive,

and then just when the days are all twilight,

when you need it most, it stops.”

-A. Bartlett Giamatti

This is one of my favorite quotes.  It holds many meanings to me. Most are from years ago,  but I thought of the poem today at Kalvin's last baseball game.  Although, Kalvin's season ended today and it is only mid July, it seemed sad to me that it was over.  Like a part of summer was ending too soon.  Time goes so fast.  I had such dreams for Kalvin and I this baseball season.

Something in me was renewed on that April Day.  Patriot's day here in New England.  It was unusually hot for April. And I love the heat.  We were on vacation from work and school.  The Boston Marathon was taking place,  the Red Sox were playing early and the boys and I headed to the back yard to kick off our baseball season.

As we started to play,  it all came rushing back to me.  The fun of the game.  How rewarding it can be to play the game with kids.  The smiles on the their faces as they make contact with the ball.  Watching their little legs run full speed around the bases.  It was something I knew well.  Baseball.  Kids.  It was finally my season.  I don't think I had any idea how much I really missed the game.

I began teaching Kalvin all the tips I could remember from my days as a nanny to two little boys.  Boys of a Red Sox player.  Kalvin began asking me lots of questions about those days.  Questions only an eight year old would think to ask.  Like what kind of food the players ate and when.  What time they went to the ball park and what time they got home.  Where did we park and how many balls did we catch.  Things I had never really thought about.  The look on Kalvin’s face said it all.  He could not believe that I,  his very own mother,  actually knew some things about baseball.  It was priceless.  And I was loving it.  

Kalvin really hadn’t had a big interest in the Red Sox before last year. 

 And now,  he just couldn’t get enough of them. 

 It was such fun to have my son so enthralled by what I was saying.

To have his full attention for an entire afternoon.

This was really going to be our season.

Kalvin joined a tournament after his baseball season ended. 
He wanted to keep the season alive.  The games were Tuesday and Thursday evenings. 
We had grown accustomed to having the whole family together on these nights.
 Sitting outside,  enjoying the summer while cheering on the team.
 It was fun for the whole family.  We were finally adjusting to the new schedule and
we only had one game left. 
It was feeling just like Giamatti's quote,  “just when we need it most, it stops”.

  We made it to the finals.  

It was the last game and we were up against our rival. 

They had crushed us earlier in the tournament. 

This last game was going to be a tough one.  

I arrived at the park to a game underway. The score was tied 3 to 3.

 Kalvin was up.  He had been hit by a pitch a few times earlier in the tournament. 

 Now when he was up at bat and a kid pitched, 

 he was jumping out of the batter's box to avoid being hit by a ball. 

 “Stay in the box Kalvin,”  I thought.  “Just like we practiced.”  

He was doing it.  He was staying in the box.  Sort of. 

Ahhh.  Relief.  For me.

He walked.  Pheww.  He made it on base. 
Now, the bases were loaded.  Two runs walked in.
 We were winning 5 to 3.  Kalvin was on third.

Kalvin's anxiety is very apparent in a game. 
He is not a fast runner to begin with,  but running in a game
he is very nervous about getting hurt or hurting someone. 
He runs the bases very c a u t i o u s l y.

My heart was pounding.
  I was praying all would work out okay for Kalvin. 
The third base coach knew Kalvin needed a lot of time to get to home.
 The coach waited until it was clear and then he told Kalvin to run.
I was so nervous,  but it looked like he would make it to home safely.

He did.  I exhaled.  And then,  out of nowhere,
the ball sailed into the catcher's mitt.  
I could hear and see complete chaos transpiring around home plate. 
Kalvin was standing there as the catcher hovered over home plate.
People were yelling , “Tag the plate, tag the plate! The base, touch it Kalvin!”

“No, No,” I thought.  "This can't be happening."

Then, I heard it.  The Umpire yelling, “O U T!  You are O.U.T!”

It was heart wrenching. The announcer began praising the “great play” at home. Over the loud speaker.  I wanted to cry.  Really cry.  Poor Kalvin.  This is not what he needed. 
This was not going to help his self esteem.

 But,  we were still up by two runs. I went to play with Finn for a moment.  I looked up to see the bases loaded.  But this time it was the other team standing on the bases. 
“Oh noooo, please don’t let us lose by one run.  Please, please, please,” I pleaded.

Then a ball was hit.  Really far.  Yup.  A homerun.  Was this really happening?
The score now 5 to 5.

“Extra innings!” the Umpire hollered.

We ended up winning the game by one run. 
One run. 
What a game. 
My stomach was still in knots.

As we drove home we didn’t talk about the incident at home plate. 

 We just reveled in the joy of winning.

 It was great fun.  For Kalvin. 

He was so excited. 

His big trophy resting on his lap. 

Then, out of nowwhere, Finn yelled out,
“Kalvaan. Kalvaan,  did you stay in the battah’s box tonight? 
You have to stay in the battah’s box,  Kalvaaan!”

It appears Kalvin now has his three year old brother coaching him as well.

Maybe this season baseball was stopping just when we need it to the most.

Growing Up Brave

 

Anxiety.  Kalvin has experienced difficulty with fears and anxiety his whole life.  The majority of his anxiety seems to be classified as separation anxiety.  From us.  From his teacher.  He is willing to try anything  if we are with him.  On the flip side,  he is willing to sacrifice just about everything if we are not.  I am still amazed at what he is comfortable doing if I am within eye shot.  This boy will try pretty much anything.  And with a smile.  Maybe a strained smile,  but a smile all the same.  I have to say,  that is a lot more than most people will do-anxiety or not.

 

Kalvin had his first piano recital recently.  He was very nervous,  but only slightly about performing.  Most of his worry was about where Lars and I would be seated.  Would he be able to see us?  Would we sit in the front?  What if we got up and left while he was performing? 

That is the one that stings.  Really pulls at my heart strings.  How could this little boy even think for a second that we, his parents,  would get up and leave,   abandon him at his piano recital?   Yet this is a common theme that runs through his mind.  It is heartbreaking to watch him struggle with these thoughts because you can tell he doesn’t choose to think this way.  He can’t help it. 

 

 We were referred to the Center for Anxiety and Related Disorders at Boston University (read more about the Center here) after Kalvin’s three year IEP review and extensive testing this past spring.  Our assessment is scheduled for July 16th.  The questionnaire is pretty interesting...I will share more later.  It may take up an entire post.

The Center is a top rated facility that provides state of the art cognitive-behavioral treatment for children and their families.  We are very excited and hopeful that we will learn some strategies that will allow Kalvin to feel comfortable doing things without us.  Normal things others take for granted.  To be able to wait in the pick up line at school without fear and panic overwhelming him that we won't come to pick him up.  Ever.

I have recently read the book Growing Up Brave written by Donna B Pincus - a Research Associate Professor at Boston University, and the Director of the Child and Adolescent Fear and Anxiety treatment Program at the Center for Anxiety and Related Disorders at Boston University.  (which  you can review here).  Growing Up Brave has helped get us started with some proven strategies.  I highly recommend it.

 

 

We weren’t quite sure how Kalvin would do,  performing in front of over sixty people.  Especially when the schedule changed at the last hour and he was suddenly slated to go on first.  His teacher offered to change the line up so he wouldn't have to be the first. performer.  He decided he would go first.  He could do it.  He had chosen a simple song for his first performance - Sea Story.  He did a great job!  See for yourself.

 

 

Kalvin, you continue to make us so proud every day.  We could not ask for more.