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1 Year, Trip To Stanford, And 2 Broken Hearts

Last week Wednesday was 1 year since Patrick's been gone. Tuesday and Thursday were spent at LPCH (Stanford's children's hospital). It was very hard going back up there, and seeing some of Patrick's doctors, but I'm so glad I did.  I hate a quick cry with one of Patrick's pediatric cardiologist (since he had a CHD, adult cardiologists had no clue what to do with him, so he saw pediatric cardiologists too).  He told me that Patrick was a great person and he thinks about him often.  And now he gets to take care of my kids too.

We got a 2nd opinion on Robbie and that cardiologist said other than the PFO which is way to big to ignore, and because of his symptoms, we need to monitor closely, the rest of his heart is structurally sound. So he ordered an exercise test (exercise ekg) to see if that would show why he's having chest pains. We are still waiting on the results for that. If its not the heart, then we have to go on to pulmonary and see if its his lungs or if there is something going on with his chest wall.  He's had a few times when he wasn't doing anything and had the chest pains but they usually happen when he's running.  Back in September he started running 2 - 3 miles a day.  In November he stepped it up to 5 miles and that's when the chest pains started.  We also found out while we were at the hospital that if he tries to walk up more than 2 flights of stairs he gets the chest pains.

Jazzy also has a PFO. Her's is bigger than Robbie's. His is 4mm and hers is 6mm. Because of the size, he wants to monitor her closely. He said that he could tell me that it might close on its own, but he's doubtful because of the size, so in the future she will need to have the closure done, but he wants to wait as long as possible since she's still growing.

The timing of the trip to Stanford was horrible, but I am so glad we did it.  I got so many of my questions answered and I feel like they actually took my concerns seriously.  Plus they knew that I had been through so much with Patrick, so I knew what I was talking about.

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Comment by Morgana (Janet) on April 16, 2013 at 7:49pm

(((Sam))) and hugs to Robbie and Jazzy too.  I am so glad you are finally getting some answers and know what is going on with both Robbie and Jazzy.  Never ever let anyone tell you that you are not a good mother.  Ypu by far one of the best and bravest there is.  Keep on hanging in there and going with your instincts.  Love ya sweetie.

Comment by onmyown on April 15, 2013 at 9:45pm


You all are in my thoughts and prayers. Make sure to take care of yourself. I know that is easier said than done. Sending good thoughts your way.


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