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!"