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!