I have a heart baby…Part 4

After the 4th surgery and scary complication things died down for quite a while.  We got to enjoy having our two boys and let them be kids.  The following summer they did another heart cath to determine when they were going to repair the hole in his heart.  They did some ballooning to open up a narrowing in the pulmonary artery and also used some coils to redirect bloodflow to his lungs.

The next surgery was scheduled for September 2007.  The surgery was to repair the hole in his heart as well as connect a collateral vessel (a blood vessel his body developed to get enough blood to his lungs since his pulmonary arteries were small) to the main pulmonary artery and get the blood flowing where it should.  The surgery went well.  The hole was patched but they needed to poke a small hole in the patch because it created too high of pressure in his heart.

There was a surprise however.  He was brought out of surgery on a temporary pacemaker.  We were not informed of this being an possibility so it was a HUGE shock to us.  The thought of him having to have a pacemaker permanently was unthinkable as it would mean he would not have the ‘normal’ life we wanted…he would not be able to play sports, etc.  At first the surgeon didn’t even want to discuss it because he felt it was going to be temporary.  Word was that they typically wait 5-7 before deciding if a permanent pacemaker is necessary so it was a waiting game.

The problem with his heart was that the top of his heart was not talking to the bottom part and they were going at different paces.  The surgeon was dead set that it was going to start working but after a week he reluctantly scheduled the surgery to place the pacemaker.  As I said it was not a great time for us thinking about all the restrictions that would mean for his life, especially hockey!

The pacemaker surgery was scheduled for 12:45 pm on October 4th, 2007.  The morning was spent trying to occupy him as he couldn’t eat due to the surgery.  One of the male nurses was known in the PICU for using the hand sanitizer to draw characters on the windows for patients.  He came and drew a SpongeBob picture on the window and his nurse happened to look up at the monitor and noticed that his heart appeared to be working in normal sinus rhythm (both parts were talking to each other).  It was 10:30 am!  The nurse called in a cardiologist to verify that what she was seeing was correct and he agreed.  The pacemaker surgery was called off and our boy had his normal life back!  The surgeon called him his ‘little miracle worker’.

The day we got home he got out of the car and proceeded to hit the baseball off the tee.  He is an amazing kid and I can’t even believe that he was born with a heart condition.  No one would even guess it.

This brings me to where we are at now.  He is currently scheduled for another surgery on October 12th.  He needs to have the valve replaced that is in there as it is leaking and causing his heart to work harder than necessary.  It is going to be a tough one this time I think because he is older and more aware of what is going on.  We know he’ll be resilient as he always has been but he will be missing school, hunting and hockey…that will be the worst part for him actually.

More to come on this continuing journey.


3 thoughts on “I have a heart baby…Part 4

  1. This is such an amazing story – such a strong little man you have.

    I remember when he had the pacemaker, as Jamie was very worried about his little nephew. I didn’t know you (well), but Jamie was with us a lot back then and I remember when he called Josh to tell us when his heart took off on it’s own! We were so relieved for “Jamie’s Nephew” and for the “normal”, hockey-filled life he could now have!

  2. Thanks ladies…he is an amazing kid!

    He will likely miss some of this hockey season. Not sure when it starts exactly or how long he’ll need to be out. He is NOT going to be happy about that but regardless of when we do it he will miss something.

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