What I know, but without the official word…

Our trip to Primary Children’s Hospital in Salt Lake City wasn’t quite what we expected, but we are pleased with the progress that was made.  Paul did not get to have heart surgery on Thursday as we had originally scheduled.  It was difficult for them to get the images they needed of his heart from the echocardiogram, so on Wednesday night, he was admitted to the hospital so that all of his diagnostic needs could be coordinated as inpatient instead of outpatient.  So on Thursday, Paul was sedated for a cardiac MRI, as well as for a bronchial lavage to investigate some oddities in his lungs.  All procedures were a success.

The results of the bronchial lavage will likely indicate that Paul needs to be on antibiotics for 6-8 weeks prior to surgery.  No big deal, we have the prescriptions and will start the treatment.

They found a few issues with his heart.  I found these neat images online that show what the problems are.

The first is called a patent ductus arteriosus.  There is a vessel that should have closed up, but didn’t, and connects the pulmonary artery to the aorta.



Second, there is a coarctation of the aorta, which means that it narrows, constricting the amount of blood that flows through.  This narrowing is typically near where the PDA is, but I won’t know for sure until I get a report from the cardiologist.



Lastly, Paul has an aberrant right subclavian artery.  This is an artery that branches off of the aorta (everything with him has to do with the aorta, apparently!).  In a normal heart,  the right subclavian artery is just like it is in this image:



For Paul, however, it does not branch off with the right common carotid artery.  Instead, it is on the other side, like in this picture, and it swings around the back.  The only thing that is different with the image below is that instead of the right subclavian artery putting pressure on the trachea, it is putting pressure on Paul’s esophagus instead.  Hope that makes sense.




The cardiologist can already tell that Paul does have some pulmonary hypertension (PH) from these defects (really the first two; the third one isn’t as big of a deal).  Though he doesn’t believe the PH is irreversible.  It should return to normal given enough time after the defects are repaired.

So this is what we know about his heart before getting an official report from the cardiologist after he looks at the cardiac MRI.  The MRI will serve to help us figure out the best type of treatment (open heart surgery vs cardiac catheter).  Chances are on open heart surgery, but there is a possibility that the coarctation isn’t too severe, so it could be left untreated and then the cardiologist could just correct the PDA in the cath lab.

In any case, we will find out more in the next week.  Until then, Paul is so happy to be home.  He is smiling more and more and is feeling so much better.  I can only imagine the joy he will have when he physically feels better, having a heart that functions well, giving him energy and zeal.


*Last but not least…big news!  Simeon has a family committed to him!  I don’t know who that family is, but let us pray in praise and thanksgiving to God, for the family that will give this little man a chance at a real life!  I’ll let you know if and when I find out more!*


3 thoughts on “What I know, but without the official word…

  1. Hafsa

    Ilove your attitude about not being able to know everything going on with your son’s heart. Thanks for the updates.

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