L-loop TGA Research Study

We were asked to volunteer for a study to research if Diego's defect is genetic. It's simple; we agreed to have blood drawn from all 3 of us. Diego becomes a number.  This will not benefit Diego, but over time, if enough data and research are gained, it could potentially help another family. The study is being conducted by Children’s Hospital Boston and National Institutes of Health (NIH).  

Heart Cath

I had to drag Diego to the hospital this morning at 7:00am. I'm not sure where he got his stubbornness ;-)  By 9:00am he had gone back for the heart cath. He was very nervous, shaking in the bed and fighting back tears, but once they gave him versed in his IV, he was cool. The heart cath doctor said the procedure would take about 2 hours and he would be in contact with Dr Marx & Dr del Nido during the procedure.

A Diego quote, "Is it over?  Hmmm, that wasn't so bad. I don't know why I was so scared."  Dr Marx was still very pleased. The LV has the same pressures as the aorta which is great. There was some very brief heart block (electrical communication between the upper and lower chambers telling the heart to pump blood). This is typical with Diego's defect. He had this same brief issue in Houston. There is always the chance of Diego needing a pacemaker, but so far not necessary. He is recovering... beginning with popsicles and slowly moving into solid foods. He has to remain flat on his back for awhile to ensure the cath line entry point in the groin does not bleed. I can see in his eyes that he is so grateful to have this step behind him. We will be here for at least another 4 hours. 

Pre-Op Echo

Dr Marx said Diego’s left ventricle wall is as thick as ours (an adult). He truly couldn't believe it. His overall physical growth completely surprised him...it came at the perfect time. The heart cath on Monday will confirm everything.  Dr. Marx feels very confident that his LV will adjust easily to the increased pressures of the double switch.  

I believe with all my heart that Diego’s efforts to remain physically active this past year, his determined soccer coach that knew exactly how much to push and his mother’s obsession with healthy eating has set Diego up for a huge surgical success.

A 3D image of Diego’s heart

The Storm

The night before our departure for Boston a storm blew through T-town.  The strong 

winds knocked our neighbor’s tree onto our electrical line which pulled the line down and the electrical box off the exterior wall.  We awoke at 4:00am without electricity.  There was nothing we could do about the house at this point so we prepared for our flight to Boston.

 Once the sun rose I received a photo of our backyard.  Underneath the tree is/was Adelina’s favorite place to pass the time…our swing set.  

I’m grateful for Team Diego which is comprised of amazing friends and a strong family.  Within 48 hours they had electricity restored to our home and the backyard cleaned. 

Thank you Team Diego…You amaze me!

Soccer City Team Diego Party

What a FANTABULOUS day!  “Team Diego” organized a great event for Diego before he left for his surgery.   It was a day filled with Diego’s favorites; good friends and soccer!  They played hard for 3 straight hours.  In the end, he was surrounded with love.  

Thank you for lifting Diego up with your encouragement and fellowship.  We are truly blessed. 

We all had Scars

Diego has been asked many times what he has enjoyed most about his summer.  Quickly, without hesitation, he responds, “I loved CHAMP Camp.”  One afternoon Diego asked, “Mom, do you know why I loved CHAMP Camp so much?”  Of course I conjured up a quick array of reasons; because it was his first time to participate in an overnight camp, because of all the activities, because of the snack shop where he had cash to spend, my thoughts continued.  Then Diego answered, “Because we all had scars.”  Tears quickly filled my eyes as I realized now Diego knows that he is not alone in his battle and this simple fact brings him comfort. 

The following day I set down with Diego and explained that there is someone else in his life that also understands his fear, pain and suffering.  When we look up at the crucifix each Sunday during Mass we are reminded that Jesus has walked in our shoes.  There is no pain in our life that Jesus did not experience in his humanity on earth.   This is such a powerful feeling to know that God understands. 

I explained further to Diego that God doesn’t always answer our prayers exactly as we ask them.  Sometimes we have to listen to the stillness to hear God’s answer.  In our hectic and stress filled lives it can be challenging to listen.

I love Sunday mornings, early before the air gets busy with sound.  It’s so peaceful and if you listen closely you can hear God whispering through the trees. 

-Stephanie Reagan   

Back Porch Rocking

One evening early in the summer Lucia asked, “Mom, if you could have any super power what would it be?”    After some thought, I decided that I would wish for the ability to make time stand still.  The reason being, Diego is in such a good place right now both emotionally and physically.  I feel he is in the “safe zone”.  This is a place where I don’t find myself on constant alert.   Instead, it is a place where I can find great comfort and peace.  I would simply like to stay and relish in it for awhile.  It’s kind of like sitting on the back porch rocking as the world passes you by, yet you don’t really seem to care. 

Back porch rocking is one of my favorite past times that I haven’t been able to enjoy in quite some time.  I can’t seem to quiet my mind long enough to let the world pass me by.  Instead, I find myself trying to prepare for the next obstacle in the road, ready to swerve. 

Logically, I know that the next obstacle to conquer is the double switch surgery.  I believe that it is the next right step in Diego’s heart journey.  The PA band has strengthened his left ventricle which means that it should be capable of sustaining the new pressures that will be placed on it with the anatomical repair.  However, I have educated myself enough to know there are no guarantees.  To a certain degree, we are taking a leap of faith.  So for now, I’ll take Lucia’s lead and pretend that I can make this moment in our life stand still and do some back porch rocking.