A New Heart for Paulie

Two years ago, at the age of three, our little Paulie suffered a stroke due to a blood clot. The clot was a result of a massive aneurysm on the left ventricle of his heart. We were given the option to either place him immediately on the heart transplant list (status 2) or wait and see how his condition progressed. We followed the advice of his cardiology team and decided to medicate and wait. We were told that the longer a child has their own heart (as long as their condition is stable), the better. All was good. Paul was on two long term medications to stabilize his condition: enalipril and Coumadin. He could pretty much keep up with his peers and was a typical, active, happy boy.





In May of 2014, Paul developed a simple cold and within a day he was in the CICU at Children's Hospital of Denver. He was experiencing a rather nasty episode of congestive heart failure. At first, it masked itself as pneumonia, but after a series of tests, it became obvious that he was in heart failure. We were in the hospital for five days and he was released to go home. Problem is, he was not recovering. We were home for almost one month from the hospital, and we helplessly watched as he faded before our eyes. He was listless, losing weight, cranky, and always angry.

Then one night he was terribly uncomfortable, complaining of severe shoulder pain, upset stomach, and breathing problems. Off to the emergency room we went and back to Children's Hospital, straight to the CICU. This was June 11, 2014. He is now on IV medication (milrinone) 24 hours a day to keep his heart functioning. His transplant status has been upgraded to 1-A.

We hope to be released from the hospital this coming Monday. Paul and Mandy (his mom) will stay at the Ronald McDonald House and wait for a heart. Mandy quit her job in light of the current situation to be with Paul.

We plan on blogging about this experience to both connect and educate.  We have so much to learn about the heart transplant process!  We want to share what we learn.  We also hope to help other families that are experiencing this journey by detailing our experiences.

ANY help you can offer is much appreciated.  When we started down this path, the cardiac social worker talked to us about fundraising.  I had it in my mind that I would never impose on anyone... I thought, "We can do this on our own".  Then the reality of what a heart transplant means for Paul's entire life set in.  He will have to deal with a lifetime of medical proceedures, hugely increased risks of additional ailments, possible future heart transplants, etc...  The list is actually quite daunting.  We also have the reality of co-pays, living expenses (our household is split, with half of the family living in our home town, and the other half living in Denver).  There is a lot!

So, we are swallowing our pride and we hope that you find it in your heart to give us a hand.  I really mean it when I say ANY amount helps.  If you can spare a dollar, awesome!!!  To that I say YOU ROCK.

If you cannot help financially, then please keep my little boy and our family in your thoughts and prayers.

Thanks a bunch!!

The Carlssons
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His Amazing Primary Cardiac Doctor #1

His Amazing Cardiac Doctor #2

The Most Amazing Pediatric Cardiac Team Ever:
http://www.childrenscolorado.org/departments/heart

There are so many doctors, nurses, and additional medical staff that support the precious cardiac kids at Heart Institute.  I highlighted the above two docs because they are the ladies that we have dealt with the most.  Especially, Dr. Miyamoto.