First Night in Pediatric ICU

It was close to 6:30pm before we were able to see Diego in the PICU.  After surgery Diego’s blood pressure was high and his heart rate was slow.  They balanced his meds to get it under control and gave him a blood transfusion.  His heart rate is being controlled by a pacemaker, but this should only be temporary.  The pacing wires are always inserted as a precautionary measure for instances like this.  He is highly sedated with versed and morphine and on meds to keep him paralyzed so he shouldn’t be in any pain.  

Later in the night Diego started running a fever so they iced him down.  They also started him on Lasix due to swelling.  My understanding is there will be several hiccups over the next 24 hours or so.  The doctors and nurses will monitor him closely and adjust accordingly.   

Surgical Updates

9:00am        Diego is asleep

10:00am       Incision has been made

11:30am       Diego is on the heart bypass machine

1:00pm         The half way point of the Double Switch repair

2:45pm        They are starting to bring his body temperature back up in order to bring him off the bypass machine.

3:15             Diego is off the heart bypass machine

3:45            Dr. del Nido spoke with us.  Diego did great.  Del Nido completed the double switch, closed the VSD, and did some repairs to the tricuspid valve.  The only problem (which is typical in older double switch patients) was the pulmonary valve had become significantly enlarged from the PA band.  Del Nido took a significant amount of tissue out of the pulmonary valve in hopes of preventing further problems later on down the road.  He did not detect any heart block.  He said the next 3 hours are crucial. They will be watching closely for any bleeding.  It will be at least another hour before we can see him. 

Team Diego via Boston

Diego did not want to get out of bed this morning.  He used every tool in his toolbox to stay toasty in the bed.  He had a difficult walk to the hospital full of tears and fear.  By the time we arrived in the building he seemed to be pulling himself together.  

Right on time, the anesthesiologist team showed up at 8:30am.  They gave Diego the oral meds to help him relax, but to no surprise, it did not faze Diego.  He was determined to keep his eyes wide awake.  The team of doctors began pacing the floor and 20 minutes later showed up with scrubs for mom.

I went with Diego back into the operating room.  They placed the grape flavored gas mask over his face to start the inhalation meds.  Diego became agitated so the doctors had to softly constrain him for a brief moment.  Then, he was completely asleep.  

Today’s Motto

“Worrying does not take away tomorrow’s troubles; it takes away today’s peace.” 

Our day began with a train ride to the north end of Boston. 

Along the way we stopped to watch some street performers…

Followed by a trip to the New England Aquarium…

Stingrays

We stopped briefly to observe the boats in the bay.  Then turned around and, “Where’s Diego?”  He had quietly slipped off and recorded the following message for everyone at home...

Yes, we really did have ice cream before dinner...

Handmade pasta in Little Italy (I’m not sure who enjoyed the meal more, Diego or his parents;-)

Diego spied something while doing a little window shopping…

Neymar~Brasil 

My favorite part of the day has been hugging and squeezing Diego, a bunch!!!  Once he is admitted into the hospital he is connected to so many wires, plugs and tubes that it is almost impossible to find a spot to love him.  

This was Diego’s last food or drink for several days.  Once we return to the Inn he has to wash with the antiseptic soap.  He is the first case in the morning which means we arrive at the hospital at 7:00am.  He will meet with the anesthesiologist team at 8:30am and the process begins.  They don’t expect Diego to be done with surgery before 3:00pm.  

Peaceful Dreams

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