Children's Heart Foundation Walk -Boston

This beautiful video is by a heart mom and co-worker of mine.  We have become close through our heart stories.  Izzie's Hope will be walking along with Kalvin's Zipper Klub on April 27th in Boston to raise money for the Children's Heart Foundation. We will be joined by many family members-Emilio Straubel & Logan Straubel.  Please join our team!  Kalvin's Zipper Klub

Here is Isabelle's video.  Isabelle is eight months old.  Isabelle has HLHS.  It is one the most complicated congenital heart defects.  Help make a difference in her future as well as all children with congenital heart defects.

Moving forward with Dr. Kim’s (Children’s Hospital Boston) novel artery surgery

Kalvin enjoying a Five Guys cheeseburger after meeting Dr. Kim.  YUM!

    Kalvin,  Lars and I met with Dr. Kim at Children’s Hospital Boston to discuss Kalvin’s options for replacing the damaged portion of the femoral artery in his left leg.  I have to admit,  I wasn’t sure what to expect from Dr. Kim.  I wasn’t sure what he was going to say Kalvin’s options were and I wasn’t sure how his bed side manner would be.  After all, he is a Professor of Surgery at Harvard Medical School,  Director of the Pediatric Transplant Center and pioneer of this amazing artery stretching procedure,  would he be able to talk to Kalvin without scaring him?

Would the surgeon that pulled off a medical first:  A fourteen hour operation,  where he transplanted six organs simultaneously in a young girl,  who was battling a rare tumor that engulfed her entire abdomen,  have the patience to talk to Kalvin and answer allll his questions?  Would Lars and I be able to understand what he was saying?  Once again,  Children’s Hospital Boston demonstrated why they are the number ONE pediatric hospital in so many categories.  Dr. Heung Bae Kim was amazing.  Amazing.  He was so good with Kalvin.  He drew a picture of Kalvin’s leg  (on the back of Kalvin’s homework nonetheless)  and arteries in a way that made it easy for us all to understand the problem and the possible solutions.  Kalvin loved him.  Which is a good thing because it looks like we are going to be spending a lot of time with the Good Doctor over the next six months.

Kalvin being goofy for the camera and really savoring each bite!

We have decided to go ahead and have Kalvin be the fourth person in the world to have a balloon or fake tumor implanted in his abdomen behind a healthy artery.  The "fake tumor,"  when filled with fluid,   will expand like a balloon,  thereby stretching the healthy artery . After approximately six weeks of filling the balloon with saline and monitoring it via ultra sounds three times per week,  the artery should have grown long enough to give us the extra vessel needed to transplant and replace the damaged portion of his femoral artery.

Implanting the balloon like device, or fake tumor as I like to call it,  will require a two night stay at Children's Hospital - it is major surgery.   We are planning to do this once school is out - June 27th.   Hopefully, the balloon will stay in place and won't require any "adjustments."  Adjustments will require major surgery.

Transplanting the new vessel in his leg will require a week stay in the hospital.   Dr. Kim is estimating it to take six weeks to grow the artery around the balloon-like device bringing the surgery date for transplanting the artery to August 8, 2013.  The transplant surgery will take approximately six to twelve hours.  Yes,  a full day.  Twelve hours.  That is a long time.  A long time to be under anesthesia.  A long time to be in the waiting room.  A lot of hospital stays for one seven year old boy.   We have considered all of this.  We have given this a lot of thought.  We want to do what is absolutely the best for Kalvin,  but we also have to consider his emotional ability to handle all of this as well. 

Kalvin being silly after eating the whole cheeseburger!

The difference in this procedure from the other options available is that this will last a lifetime.  The result is a fix that will grow with Kalvin and last a lifetime…we hope.  There is only one other child that has undergone this surgical procedure and that was in January.  Of  2013.   The long term effects are unknown at this point. See the Boston Globe article about the first person, Ameigh,  here: Her medical hope grew within

This is a chance to give Kalvin back what was taken from him when he was three months old.  A fully functional left leg.  It is more than we ever could have hoped for.  One surgery and a lifetime fix.  We just hope and pray that we don't face many setbacks and that Kalvin  "gets his brave on"  and that it stays on and that he remains upbeat during the entire lengthy process.  Hopefully,  this won't be too much to ask of the "lucky bean".

If you haven't been following this story all along,  there are two prior posts that explain what happened to Kalvin's leg to require such a novel surgery.

 They are How we got here - contemplating-novel artery stretching surgery.

 And  If-we-dont-do-something-now...contemplating an artery stretching surgery.

And there is more on Kalvin's leg in this post as well:  A Silver Lining.

You can read about a similar procedure of which this procedure is based off of  (for the aortic coarctation)  in the New England Journal of Medicine, December 2012. 

A Novel Treatment for Midaortic Syndrome

I will be sure to document and post all his appointments in a timely manner so that you can follow along and be kept up to date.  I guess I can bribe Kalvin with a trip to Five Guys after each visit - that should ease some of the pain (and expand my waistline).  Kalvin has a CAT scan  (believe it or not,  his first) coming up.  The CAT scan will show exactly how many inches of artery we need to grow to replace the damaged portion of the femoral artery.  We will have the bean with us for sure! 

The Lucky Bean-Superstitions

Lars and I picked this bean up on the beach during our honeymoon in Turtle Island, Fiji.  We had heard the legend of the "lucky bean" and packed a few away in our suitcase.  Never did we imagine then, the things we would be asking of this little bean.

This little lucky bean has provided a sense of hope and security ever since Kalvin's CDH diagnosis at twenty weeks. The bean was securely tucked away in Lars' pocket during my first fetal echo on January 7, 2005.  It was there in Lars' pocket at Kalvin's birth.  At every surgery.   At every cardiology appointment Kalvin has ever had.  We have even turned around and gone back home to retrieve the bean when it was accidently left behind.  We have faith in the lucky bean.

I am very familiar with superstitions.  I was a nanny for many years for a professional baseball player.  We went to all the games.  There were many game day rituals.  We watched Nomar Garciaparra's glove-tugging and helmut tapping at bats over and over again.  At every at bat.  Every night.  Baseball players (and fans) have many superstitions which lead to a variety of strange rituals.   The one player that I always found to be the most unbelievable was Wade Boggs'.  His wife would describe to us his strict daily routine.  It was hard for me to fathom Wade's superstitions.  Did he really believe he needed to follow this routine every night or his game would change?  His luck would run out? We chuckled as he ate chicken before each game,  took batting practice at exactly 5:17 and wrote "Chai" in the sand before each at bat.  Really?  This is all necessary?  Now, all these years later,  I find I can finally relate and understand why Wade was eating chicken every game night.  I understand that Wade really believed in these rituals.  He needed them.

We need the bean in Lars' pocket whenever we step foot in the lobby to Children's Hospital.  I frantically ask Lars if he has the bean as we head out the door to an appointment.  Then, I ask again later when we are in the middle of an echo.  "Psss," I whisper, "Do you have the bean?"  And Lars will take it out of his pocket,  rub it a few times and show it to me.  The bean provides comfort.  the bean has not let us down.

As we contemplate Kalvin undergoing Dr. Kim's artery stretching procedure,  I find myself wondering if we have we asked too much of the bean already?  Are we being greedy?  When does the bean's magic run out?  Does it's luck ever run out?  Perhaps,  just maybe, it's magic goes on forever.

 I was thinking there are probably many families who also follow a ritual,  have a lucky charm or a spiritual belief that they use during check-ups, surgeries or difficult times.  What is your lucky bean??  Love to hear them - please leave a note in the comment field.

A True Inspiration

About eight years ago,  I became friends with a family who changed my life, The Lacey Family.  Kalvin was a baby and Will Lacey was too.  A baby.  A baby diagnosed with Neuroblastoma.  His father, Pat, wrote an amazing blog about their life.  A blog that inspired me to be a better parent.  A blog the made you realize life is so very precious.  I read Pat's blog every day and prayed for their family.  I could not get them out of my mind.  For years, everything I did with Kalvin, I thought of Will.  I prayed for a miracle.  Miracles come in all forms.  It seems theirs came in the form of one

Dr. Scholler. 

Pat is a truly talented writer.  Take a moment and visit his blog and be inspired by his words on parenting in his last entry-Pride.  For Pat and Will have a lot to be proud of.  I promise you,  you will be inspired.

  Will's picture hangs on my refrigerator.  Everyone in my family knows who Will is.  Everyone knows who Will is because of what he does and who he is and not because of what he has (whisper... shhh cancer).  We don't even think of that anymore.  We think of Will the hockey player around here and apparently, that is Pat's hope.  

"And all along I lived my entire life and did all of these innumerable things with the indefensible hope that one day he’d have a chance at a life like a normal kid."  ~Pat Lacey

All parents carry around a lot of hope for their families.  Maybe heart parent's and cancer parent's hope looks a lot different from other parent's hope.  Maybe not so much.  Maybe it all looks pretty similar. 

Thank you Pat, once again for inspiring me.

Will Lacey- Pride.



Kalvin 6 months...be inspired.



Will We Be Walkin' in a Winter Wonderland on April 27th for the CHF Walk?

U N C L E.  That is what my neighbor spelled out in the snow today.  I had to laugh.  How perfect.  Today is March 19, 2013.  The last day of winter.  I don't think that really holds much meaning to us New Englanders at this point.  Another twelve inches of fresh powdery snow has just landed in our back yard.  Don't get me wrong,  today was a day out of a children's fairytale.  School was canceled and we had 
No plans.  Notta one.  Zilch.  Nada. 

N O T H I N G   P L A N N E D. 
 That never happens around here.  I actually felt like a school girl again myself.  No plans, twelve inches of fresh snow and warm temperatures.  We are watching my nephew Emilio Straubel's black lab, Ella, and she too loves the snow.  We all bundled up and headed outside for some snow dog building. 

 Finn promptly took off his shirt when I said it was time to go outside.  He refused to join in on our reindeer games.  We let him stay inside at first,  figuring our frolicking in the snow would surely lure him to the backyard.  Instead, he repeatedly opened the glass door and yelled commands at us. 

 

Finally, he too cried UNCLE and came out to join us.  It was a lot of fun, but I am having trouble imagining the nice weather I had hoped for our CHF Walk on April 27th!  Especially, after hearing more snow is headed our way later this week. 

Visit Kalvin's Zipper Klub's Team Page here: 

Kalvin's Zipper Klub Heart Walk Page

We would love for you to join us on our one mile walk around Boston Common to raise money for CHD research. 

 I think the snow will be melted by then!

Wedding Update

This story is an update from this previous post:  A Different Kind of Broken Heart

Kalvin fell playing soccer today at recess.  His nose, chin and forehead are all scraped and scratched!  He was playing soccer with some friends when he fell.  Wait, not chasing after Catherine?!?  He has been sharing with me recess stories of late and most go something like this.  Catherine drops her gloves and runs away.  Kalvin picks them up and chases after her.  They laugh and giggle. 

As he was telling this all to me, he explained how much he loves Catherine's laugh.  "It is just so cute.  When she laughs,  it just makes me laugh too.  It is the best laugh.  Mom, she just has the best laugh.  And her eyes.   Her eyes.  Her eyes are so blue.  They are beautiful. [Deep sigh] Gabe likes her eyes too,"  he explained.  Smile stretched from ear to ear.  Seeing Kalvin so happy and giddy makes me all warm and fuzzy inside.

Wow, I realize my seven year old just explained the most wonderful thing to me about having a good friend...they make you laugh and giggle.  And they have beautiful eyes.  Again, I feel all warm and fuzzy inside.

So I did it.  I asked the question inquiry minds want to know the answer to,  even though,  even though I know I should not be encouraging this situation.  I just couldn't stop myself,  "Have you two discussed "the proposal" any further?"

"Well, we are kind of stuck right now.  We can't agree on where we are going to live," he answered.  "She wants to live at her house and I want to live at our house."

"Ohhh," I said.  "You mean you both will live at her house
 t o g e t h e r  or you both will live here  t o g e t h e r?"

"Yes, that's the problem right now, we can't agree," he said.

"You wouldn't want to get a place of your own?" I asked.

"Well,  I don't really want to spend the money," he stated.  "I am really going to try to save all my money.  In fact, the first week we are married, I am going to try and not spend any money at all."

"Mom," he said. 

"Yes, Kalvin," I replied.

"Is it okay to marry your best friend?" he asked ever so innocently.

Read more about Kalvin and Catherine Here.

Kalvin's "other" best friend.  His grandparent's dog, Ella.  She has been staying with us for a few days.  No one wantes her to leave.

My Beautiful Scars-a new CHD video

My Beautiful Scars

Destiny Burke

This is a beautiful video by a brave and inspirational fourteen year old girl who would like to share her CHD story to help and encourgae others. This is really great!!  Please, share this video to help spread awareness and make Destiny's wish come true-that is go viral.

If We Don't Do Something Now-contemplating an artery stretching surgery (part two).



Kalvin three months old

When Kalvin was three months old he had a cardiac catheterization to widen his coarc. They used the left femoral artery to snake the wire up and into his coarc where they then inflate a balloon in hopes of widening the artery so blood can pass through more easily. Kalvin's cath was not successful. Not only was it not successful, it actually damaged the femoral artery. The artery the surgeons use to snake the wire up through his leg into his heart. The area near his groin (also the entry point of the cath wire) is the portion that was damaged- one of the risks of having a catheterization, especially when you are very very small.  Small, as in a three month old baby small. Luckily, the body is an amazing machine and little arteries immediately began to grow around the damaged area and reconnect the femoral artery. Kalvin now has many spider like veins or collaterals that have grown around to compensate for the damaged portion of the artery. The problem Kalvin is now experiencing is that these teeny tiny veins cannot keep up with the demand for oxygen and blood flow to his leg. Kalvin now weighs seventy-six pounds and is four feet four inches tall.  We were able to view an amazing image of these collaterals when he had his last cath lab (January 2013). The collaterals were so small and tangled up that the surgeons could not even get the cath wire through them.

When Kalvin was in the hospital recovering from his three month old catheterization procedure we became aware that there was some damage to the artery. We were awaken in the middle of the night to a team of doctors and nurses trying to register a pulse in his left leg.  There was none. They tried using different pieces of equipment...maybe in was just due to faulty machinery. Still none. Kalvin's little foot was cold and bluish. It was all a bit surreal.  For the first times in Kalvin's surgical history, a bedside discussion involving numerous doctors was taking place and I wasn't following what was going on or registering how serious it was. There was a lot of talk about administering t-PA (Tissue plasminogen activator) to dissolve any blood clots that may be preventing the blood from flowing to his leg.  I didn't really understand the severity of the situation.  That is until I telephoned my mother-the cardiac ICU nurse. In her usual fashion she said would be right there.  But in the meantime, she told me not to let them administer the t-PA until she arrived.  And, she told me, if they were going to administer t-PA at all, he was going to need a bed in the ICU.



Kal walking with his lawnmower on his first birthday

 Ok, it was all starting to sink in, this was a very serious situation.  T-PA has some very serious side effects and people, uhmm especially twelve pound babies,  need to be continuously monitored while on it.  By the time I got back to Kalvin's room, his cardiologist,  Dr. Benavidez,  had arrived - thank goodness!!   I told him what my mom had said and he completely agreed.  It was Dr. Benavidez's opinion that there was enough blood flowing to his foot and that it would be fine left alone. There would be no need for t-PA.  He was right. The pulse became stronger.  His little foot warmed up and turned pink again! The collaterals grew and his leg continued to improve.  

As Kalvin began to grow, we noticed that his left leg didn't appear to have the same volume of muscle mass as his right. It just looked skinnier. Then as Kalvin began to walk, at around eleven months old, we noticed that the left leg seemed to be a bit shorter than his right.  His pediatrician (the best) also noticed that his left leg was in fact one cm shorter than his right and sent us to see the Chief Orthopedic surgeon over at Children’s Hospital Boston,  Dr. Kasser.  Children's Orthopedic Center is rated number one in the world - just like to throw these little facts out there!!  Dr. Kasser informed us that if the discrepancy in leg length continued to widen as he grew,  the doctors would be able to determine the growth capacity of the short leg.  Then,  when he was in his teens,  they would surgically place a pin in the normal leg when it reached the growth capacity of the short leg and stop the growth.  This would allow the short leg to catch up thereby making the legs equal in length going forward.  At this point, no one was too concerned about the muscle mass.


Kalvin at PT after school.

Over the years we have noticed that Kalvin has trouble with his left leg. He started physical therapy for it when he was three years old.  He now goes to PT twice a week in school and once a week outside of school and his leg has made considerable progress. An example being he can hop on his right leg an endless number of counts and just recently set a new personal record of 40 hops on his left leg. The problem is that Kalvin really doesn't have much muscle in the left leg. This is all due to lack of oxygenated blood flow. It is certainly not from lack of activity. Kalvin has been a very active little boy. He participates in karate, swimming, soccer, baseball, skating and skiing on a regular basis! Here is a video of Kalvin skating that demonstrates the difference in his legs ability posted in this blog post:  A Silver Lining 
  
The weakness in Kalvin's left leg is all due to the teeny tiny collaterals trying to pump blood down to this leg, but are just not big enough to do the job. They just can't get enough oxygenated blood down the leg. Kalvin has also been experiencing pain in his leg. He has the most pain when he sleeps. This is because he is lying down flat on his back and his heart and leg are on an equal plane;  gravity is not helping to pump the blood towards his foot and his heart rate slows down because his body is at rest.  Kalvin has been complaining more frequently of a hot sensation in his left leg and foot.  He actually stuck his bare foot the snow piled up on our deck last night to cool his foot down. He had only been lying around on the couch for a little while when this occurred, but he said it was just too hot and he needed some relief!  The fear is that this leg will continue to worsen and become more painful and more debilitating if we don't do something now.


Kalvin skiing February 2013

 Kalvin rarely complains about pain or discomfort...other than being nervous about something.  He is a smart boy and has caught on that this leg pain and discomfort is not normal and is leading to something bigger.
Kalvin has voiced his opinion.  He does not want to do anything about his leg.  He says it is fine the way it is and that he is willing to live with it for the rest of his life, just like it is.  Just like it is.  The problem is that is won't stay "just like it is" and it will continue to cause more and more pain and become weaker and weaker compared to his right leg.  It is our job as parents to help him to understand this...if we don't do something now, there will be bigger problems down the road.  We need to "get our brave on."  We need to move forward with Dr. Kim's novel artery stretching surgery.  We need to grow a vessel in Kalvin's own body and transplant it to the damaged portion of his femoral artery.  We need to convince Kal that all the hospital stays and doctor visits involved are going to be worth it.  We need to "get our brave on" and go for it!  We are going to have to step way out of our comfort zone so that Kal's leg can have a chance to rejuvinate.  To have a fix that will grow with him and last a lifetime.

Kalvin has always been willing to try anything when it comes to sports.  His leg may slow him down, but it doesn't affect his spirit.  He will show up to every game/event and try his hardest.  Kal doesn't get discouraged easily.  Frustrated,  yes, from time to time, but he is still willing to step out of his comfort zone.  He gives it his all.  He never complains about his leg when he is playing.  He is willing to try new sports and activities...with a smile.  Maybe a nervous smile, but with a smile.  He is an example for all of us.  Step out of your comfort zone and do something you may not be great at or maybe have never tried before.  Think of Kalvin and push yourself.  We all deserve to live our life to our fullest potential.  Go... "get your brave on!"

How We Got Here...contemplating a novel artery stretching surgery.

What Does that Mean?

At Kalvin's three month old check up, his pediatrician, Dr. Cloherty (best pediatrician ever), noticed that the pulse in his left leg was non-existent and sent us directly over to Kalvin's cardiologist, Dr. Oscar Benavidez at Children's Hospital Boston.  I was alarmed and nervous, but really kind of numb to it all...I had become accustomed to expecting the unexpected.  This was life with a CHD baby. It was a roller coaster ride and every doctor appointment made me a nervous wreck.  You never knew what the doctor was going to uncover.  The time in between doctor visits became somewhat relaxing...in a way.  I can relate it to is taking a big exam. You head in to take the test as prepared as possible,  but still get butterflies in your stomach nonetheless.  As you sit in your seat, you realize it is now out of your control. You take the test and do the best you can with whatever questions you are given.  And after you complete the exam and begin to head home, you feel the weight lift. You feel a sense of freedom. A sense of relief.  You take a deep breath and enjoy the moment. You are done.  It is over.  For now.  You feel free until the next exam is scheduled. That is how I felt in between Kalvin's doctor appointments for the first five years of his life.  Five years. That is a lot of exams.

Kalvin 3 months old.

Kalvin's leg was not receiving enough oxygenated blood flow as a result of his coarctation.  Dr. Benavidez scheduled Kalvin for a catherization to try and widen his coarc. It was hard to fathom going back into the hospital for another procedure so soon. He was three months old. He was a real little person now. A huge part of our family. When Kalvin was born we knew he was headed for open heart surgery in five days. We had twenty weeks to prepare.  Prepare...I say prepare; when in reality, nothing can prepare you for handing your five day old baby over to have open heart surgery.  Nothing...

When Kalvin was born he was immediately whisked away to the NICU and then transported over to Children's Hospital Boston.  I had to stay behind. I was in my room at the adjoining hospital, Brigham & Women's, where I had given birth, until the nurses deemed me well enough to be mobile. I felt like a prisoner. I was determined to get up and see my baby as soon as possible.  It was pure torture.  My mom stayed behind with me while Lars and my dad followed Kalvin over to Children's.  It was comforting having my mom there with me; but for the first time, she couldn’t make things all better. There wasn't much either one of us could say.

Within a few hours, before I had even seen Kalvin again, I authorized (over the phone) a catheterization procedure that was needed to make a small  hole in his heart. It was necessary to make an opening in the wall between the upper filling chambers of his heart so that the oxygenated blood could mix and flow to the rest of his body. So he could survive until his surgery.

Once his procedure was complete and he was resting,  I was wheeled over to Children's to visit with my precious baby boy.  He was just hours old.  I remember coming back from my "first visit" with Kalvin that evening.  He had stolen my heart. Touched parts of my soul I didn't even know existed.  I was head over heels in love.  A love like I had never felt before.  I was also furious with myself.  I felt so naive.  I actually had no idea I would fall that in love and become that attached to another person in such a short amount of time. I didn't know it was possible.

I had really convinced myself in the time between my twenty week ultra sound and his delivery that it would all work out one way or another. That having his by-pass surgery right away was so much better than waiting a few months, as some mother's have to, because I wouldn't really know him.  I wouldn't really know him yet?  How had I tricked myself into believing this?  How?  The truth is I had all ready spent forty weeks with him. I knew him long before his delivery. I am embarrassed to even admit that I thought that. But that is the story I told myself that helped get me through those twenty weeks. That was my tiny shred of security. I clung to that security blanket to survive;  and then just like that,  it was taken from me after seeing Kalvin...and I hadn't even held him yet.

Now, we were once again getting ready to hand our three month old baby over to a surgeon.  This baby was now such an important part of our family.  I knew this procedure would be much easier on Kalvin than by-pass surgery.  I knew he was a fighter. Both of which provided some comfort. We signed the waivers and kissed him good-bye.  It was heart wrenching.  It is a feeling I can't even begin to describe.  You really feel like you could just collapse right there on the floor as you kiss him goodbye.



Kalvin held his binkie in his mouth or it would shoot out.

 Dr. Benavidez came and gave us the update that Dr. Lock had gotten the wire up and through his coarc and ballooned it open, but that it wasn’t as successful as they had hoped. They weren't able to widen the coarc as much as they hoped.  And they had trouble getting the wire up his left leg.  Trouble with the femoral artery.  But he was fine.  My baby was fine and we could take him to the Step Down Unit and stay with him overnight.  That is really all I heard. We were going to the Step Down Unit...my baby was fine.  We weren't even heading to the ICU.  This was fabulous news to my ears.

I stayed overnight on the cot beside Kalvin's crib. I awoke at two am to a team of doctors surrounding his crib. "What is the matter? " I asked.

"Oh, we are having a little trouble getting a pulse in his foot," one of the nurses replied.

"What does that mean?? What does that mean..." I wondered.

Who would have thought that would lead us to this day.  Here we are,  eight years later facing the decision of whether or not to undergo a novel artery stretching surgery.  Transplanting vessels Kalvin will grow in his own body to replace that piece of damaged artery in his left leg.