Post Op 8 East ~ The Floor ~ Day 6

The echo showed leakage in Diego's aorta artery.  Pre double switch, the aorta was pumping blood only to the lungs (low pressure system) now it is pumping blood to the entire body.  This is what the aorta is designed to do, but in Diego’s heart for the past 10 years it has not had to maintain the higher pressure system.  Del Nido does not want Diego leaving Boston until he looks further into it.  Del Nido was in surgery this morning, but said Diego can be discharged today.  He has requested an MRI during Diego’s follow up appointment which is scheduled for 7:00am Friday, August 9, 2013.  First he will have the MRI followed by EKG, chest X-ray and appt with Dr. Marx.  We don't have any more details on the leakage at this point.  The MRI will hopefully provide more insight later in the week. 

Diego has asked many questions about the MRI. He is definitely disappointed to learn there is yet another step so quickly after discharge.  I took this opportunity to explain to Diego my recent realization.  I thought if I shared my insight it might help him to also see things a little differently.  When we made the final decision to move forward with the Double Switch operation we had to accept that our goal wasn't to cure Diego's heart defect.  Our goal was to improve his heart in hopes that he would be able to hold onto every part of his heart for as long as possible. There will always be another step in the process and another obstacle to overcome. We traded one set of problems for a different set of problems. However, the advantage is the new set of problems hopefully won't require a heart transplant or valve replacement anywhere in Diego's near future.  It has taken me many mental battles to come to terms with this and I certainly don't expect Diego to accept this fact after one conversation.  However, I do think Diego is old enough to start comprehending that his heart health will always be a part of our lives.

I also believe that we have to do our part to maintain our overall health.  Diego went into his surgery incredibly healthy.  He recovered and was discharged in 6 days from a complex operation.  A healthy lifestyle must always be a priority in our lives. 

For now, Diego is actually smiling and thankful to be leaving the hospital today.