Tuesdays with Kal & Finn-Paying It Forward

As summer winds down, we have been trying to make the most of our Tuesdays.  Some Tuesdays, we have responsibilities to tend to.  Like a post surgical visit to Children's.  This Tuesday it wasn't so bad as the weather was not the brightest.

As we were making our way into Kalvin's post angioplasty checkup in Boston, we found ourselves sitting in Tobin Bridge traffic.  On a glum day to boot.  The traffic alone can dampen the happiest of people.  It is not a pretty bridge and painting it multiple times, that I can remember, hasn't helped a bit.  As we sat,  I found us all getting a little grumpier.

Here she is, the top of the Tobin Bridge. Under construction yet again.

Coming out the other side really isn't much brighter.

Trying to think of some little happy to turn our mood around, I remembered the dollars we were given at the start of summer mentioned here.  We were planning to "pay it forward" so as we approached the three dollar toll, I yelled out, "Boys, let's pay the toll for the car behind us and surprise them!"  Everyone perked up and even got a little excited.  A little happy.  The fog appeared to be lifting.

We got out our money and quickly scooted to the Cash Lane.  We told the Toll Booth Operator of our plan and handed over our money.  As we drove through we sloooweedd way down so we could watch the expression on the driver's face as the Toll Booth Operator explained that their toll had just been paid by the car in front of them...us!  It was fun.  Not the most original "pay it forward" I admit, but it worked to brighten our day as well.  We felt good.  Happy.

 

Really, you could see the fog lift right before our eyes.

 



We had to wait for what felt like an eternity for Dr. Alomari.  He was in surgery.  It is hard to get grumpy waiting for a doctor when you know he is in a surgical procedure that is taking longer than expected.  You don't even want him to rush because you think of the precious work he is performing.  You also know what it is like to be that parent waiting while your child's procedure takes longer than expected.  You pray all is going well for the patient and their family.  You have been there.

Kalvin took a nap.

And Finn and I, well we visited the bathroom six times.  Finn is officially potty trained.  Thanks to a delayed appointment at Children's!  See happy can be found everywhere.

And Kalvin's leg.  It looks fabulous.  We went over the ultra sound in detail.  And yes, Dr. Alomari asked me if I was a nurse or a doctor.  "Seriously, are you a doctor?  I can't remember," he asked me. "And you are asking the best questions."  For those who know me well,  you know this really made my happy.  Yes, I am a doctor.  With a degree from Google and Kalvin.

Kalvin, Finn and Dr. Alomari.  We go back in six months for another ultra sound.  Meanwhile, physical therapy both in school and outside of school.

Happy

Today I woke up in a funk of sorts.  I needed inspiration.  I needed to feel.  I looked to a new friend.  Her words and pictures make me smile from the inside out.  They make me think.  She was just what I needed today.  She turned my day around.  I love when that happens.  When your intuition tells you to do something. You follow.  And your instinct is validated.  It makes you feel part of something bigger.  Today, when I checked in with Chrissy here.  I was reminded to look for happy in every day moments.  In the little things.  Thank you, friend.

Your day may start off with spilled coffee.

And then turned around by the joy of a morning ritual.  A little helper turning on your Vitamixer.

And even though summer is slipping away.  And it is a sunny 80 degree day.  And you have a doctor appointment scheduled smack in the middle of it.  You find your happy using your precious spare time to teach your boys about saving. 

 

Off we went to the local bank.

 

 

Piggy bank in hand.

 

 

Sat down and opened our first savings account.  Everyone was so excited.

 

 

Especially, when we learned that Dustin Pedroia saves his money at the same bank!

 

 



And there were prizes.

 

 

 

 

 

 

 And happy is a baseball bank.

 

 

And the smiles on their faces.

 

 

And you leave feeling that you've accomplished something.  However small.

 

 

When you search out the happy in your day,  your world turns around.  You may have to look hard and deep sometimes.  But when you really look, it is there.  And yah know-happy tastes good.







Angioplasty Widens the Femoral Artery

We arrived at Children's ready for Kalvin's angioplasty procedure on his left femoral artery.  It was a little unsettling to see the hospital surrounded by police officers and fire trucks.  And a lobby filled with doctors and nurses who were being evacuated.  Not at all the calming effect we were use to when entering the lobby of our favorite hospital. Read more on the calming effect of Children's.

Kalvin squeezed my hand a little tighter and asked what was going on.  I had no idea.  We asked one of the officers.  Code Red we were told.  Interesting that when we were here last week for our pre-op there was a Code Blue.  In all nine years we've been coming to Children's, we have never experienced a Code of any color.

 

In the Pre-Op Holding Pod Kalvin entertained us all.

First with his jokes.  He loves the nurses.

 

Then he became a little more creative with his entertainment.

 

This is Doggie he is holding.  He has been with Kalvin since he was born.

 

 

Funny faces.

 

Eye play.

 

Silly ways to pass the time and ease the worry.

Finally, we were moved down to the Interventional Radiology Pre-Surgical area. 

Where a Red Sox balloon was waiting for us.  Kalvin was tickled by this gesture.

They really do think of everything.

 

Kalvin looking up at his balloon.

 

Kalvin playing with the lucky bean.  I talked about this lucky bean here.

 

Kalvin starting to get very nervous.  He would flop down on the stretcher and say, "Just kill me.  I am going to die so let's get it over with!"  It was a long morning. 

 

We were waiting for the doctor.  We were waiting for the time to come when Kalvin would be wheeled away.  It is always the hardest part of the day.  For everyone.

 

While Kalvin was in surgery, we ventured down to the cafeteria.  This cart is run by a robot and it moves the patient's meals from the café. 

 

 It was a long wait.  Sheila is the nurse liaison for the operating rooms. 

 She was the nurse liaison when Kalvin had his open heart surgery on May 27, 2005. 

She looks exactly the same.  She has a warm smile and a genuine interest in your child and how you, the parent,  are coping.  She has a direct line to each OR. 

 

I can remember waiting while Kalvin was having open heart surgery in 2005. 

I reached a point when I just couldn't stand waiting to hear from the OR one more second.

  I jumped up and ran to Sheila's office and pleaded with her to call the OR. 

 It had been too long in between communications and I was just sure

 something had gone terribly wrong.  It was Sheila who comforted me. 

 You don't ever forget that face or that voice. 

 I see her now and we are connected.  Like family. 

 Like a favorite Aunt you may only see every five years, but you share a strong bond with. 

In the recovery area Kalvin's heart rate was giving him some trouble.  You can see it on the monitor beating at 112.  It should be around 86.  It reached as high as 122. 

 Remember, we are monitor watchers. 

He slept in the recovery area for much longer this time. 

The whole team was great at making Kalvin very comfortable this time. 

 I guess when you are a frequent flyer, they know how to treat you. 

They administered anti-nausea medicine in the OR and then again in Recovery. 

They kept him sleeping much longer this time in Recovery

because they knew he had so much trouble lying still last time. 

It was much better than in January.

 

We spent the night on the cardiac floor.  Kalvin was very excited that the Red Sox had a rain delay which allowed us to catch a lot of the game in his room. A gift from above. 

Sports, again, the great distraction. 

The Interventional Radiologist was able to maneuver the wire through Kalvin's femoral artery and widen it or should I say "open it" as it was basically closed.  He said "off the record" that he would estimate he now has the equivalence of 300 times more blood flow to his lower left leg.  The Good Doctor was not sure how long the artery will remain open this wide.  It could be six months or six years.  Time will tell.  The artery will be monitored by ultra sounds for the near future. More on Kal's leg here.

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.