The Bionic Kid

Diego has been waiting 3 long months to learn if he can participate with his soccer team again.  He returned to Boston for a stress test.

 

Dr. Marx said everything looks great.  He was very pleased.  He can hear the murmur that is due to the leakage in the aorta and pulmonary stenosis.  These are the two conditions measured by the MRI post surgery.  Basically, there are no changes.  There isn’t any leakage in the tricuspid valve.  This is the valve that had severe regurgitation pre-double switch and was repaired during surgery.  Diego will need to continue on his medications and need to be placed on a holter monitor to get a better picture of potential heart block.  Based on the stress test, he gave approval for Diego to participate in soccer.  The only limitation is to rest if feeling or appears to be overexerted.   

Go Diego Go!

Make A Wish & The TU Soccer Team

All thanks given to our wonderful local cardiologist, Dr. Kimberling, Diego will be receiving a wish from the Oklahoma Make A Wish Foundation.  The coordinator of Make A Wish called with a special treat.  The TU Soccer Team is a Make A Wish Ambassador.  Sunday November 3^rd will be their last home game, which means it is Senior Game Day.  The seniors wanted to do something special for their last game so they contacted Make A Wish to ask if they had a child that loves soccer.  They immediately thought of Diego.  Diego will be introduced as their Honorary Team Captain, along with a few other surprises. 

 

Much to our amazement, the few other surprises turned out to be earth shattering for our soccer fanatic.  It started with the TU Soccer Coach and team introducing themselves to Diego then asked that he join them in their locker room before the game began. 

 

It was an exciting moment as Diego ran onto the field with them team sporting his new TU Soccer Jersey.  What a wonderful addition to Diego’s soccer jersey collection.  This particular jersey will always hold a special story in Diego’s life.

 

 

During halftime, Diego was called onto the field and introduced as the TU Honorary Team Captain…Oh what a privilege! 

Then, something beyond his wildest dreams happened.  Notice the rolls of paper being held by the TU participants standing behind Diego.  They each unrolled their sign to reveal the following earth shattering announcement…

Your wish will come true with your whole family too!  World Cup bound June 2014

 

I think the Fox23 video below shows exactly how we were feeling in that moment. 

http://www.fox23.com/news/local/story/Make-a-Wish-Foundation-comes-to-Tulsa/8jokVdy2GkyPM4ZD1qSArg.cspx

 

 

http://www.tulsaworld.com/news/wish-for-world-cup-trip-granted/article_f2209f91-d9ac-5110-962b-87ef020323aa.html?mode=story

 

MICHAEL WYKE/ Tulsa World

Diego Segovia (center), 10, surrounded by family, reacts as he reads signs held by TU cheerleaders saying he and his family will attend part of soccer's 2014 World Cup in Brazil sponsored by the Make-A- Wish Foundation, during a surprise announcement at halftime of the men's soccer game at the University of Tulsa on Sunday.

 

Thank you TU Soccer Team and The Oklahoma Make A Wish Foundation for making Diego’s dream come true!

 

 

 

 

 

A Grand Homecoming!

Cesar, Diego and I flew home late Sunday evening.  Diego is definitely ready more than anyone to be home, but everyone falls in close behind him. 

We didn’t make it home until 11:00pm, but what an amazing welcome we received!  I had asked that no one come to the airport because we were arriving late at night.   So, the huge warm welcome we received was unbelievable.  The airport arrival was more than enough to celebrate this huge heart success, but there was so much more; the camera man (did that really happen), the house decorated, a basket full of heart shaped rocks(found by friends on a nature walk), and even food & beverages in the fridge.  It is surreal and uplifting to be surrounded by so many wonderful friends full of love, kindness and warmth. 

 

 http://www.newson6.com/story/23116066/tulsa-boy-receives-warm-welcome-after-surgery-in-boston?autoStart=true&topVideoCatNo=default&clipId=9191093
 

 

 

 

 

MRI

We arrived at the hospital early in the morning for Diego’s MRI.  It has been a wild few nights leading up to this appointment as Diego’s anxiety was definitely high.  He hasn’t slept well and yells throughout the night.  In his sleep, he fights the nurses yelling; “leave me alone”, “you are hurting me” and “get away from me!”  I can only imagine how grateful he must feel to be finished with this appointment.

As it turned out, Diego decided the MRI was pretty cool!  He loved the idea that he was able to watch a movie through special glasses.  He also liked the button and earphones that he used to communicate with the technician.  He had no problems remaining still for the MRI.  The only thing that is able to place Diego in a trance is watching a movie.  The world could be crumbling around him, but as long as a movie is playing, he doesn’t move. 

After the MRI, X-ray and EKG were complete; we met with Dr. Marx.  The MRI showed that Diego had mild pulmonary obstruction and trivial (9%) aorta leakage.  The things to look for are heart block and LV failure, but both are unlikely given Diego’s current state.  He even had his stitches removed from the chest tube incision. 

 

 
 
 
And, Dr. Marx was thrilled to receive a Heart Warrior T-shirt from Diego.    

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. 

Post Op 8 East ~ The Floor ~ Day 5

It has been a busy morning. It started early with his EKG, then he walked down for a blood draw, and X-ray.

We took a short break to sit outside. The first thing he wanted to do when he got outside was put his feet in the grass. 

Then, it was time for his echo. He is still waiting to get the pacing wires out then he will officially be wireless. I wish I could say he is happy, but we just aren't there yet. He cried a bit while we set outside. He's just exhausted and wants to be home.   There is a possibility that he will be discharged Tuesday. We will have to stay in Boston for a follow up appointment, but we aren't sure how many days that will be. We will probably know more once the team reviews the echo. 

He really does look amazing...not even 1 week out!

Post Op PICU Day 4

He had a really peaceful night. They've taken him off the pacemaker this morning. He is using a 2 on his oxygen (yesterday it was a 4). He is still on oral blood pressure meds and Lasix.  He was telling the nurse and I this morning that his tummy didn't feel well, but we didn't give it a lot of thought since he did so well yesterday. The next thing we knew all 3 of us were elbow deep in throw up. It took some time to get his tummy to settle down then he went on a mini walk (notice the barf bucket in his wheel chair). The doctors did their rounds and said he will be moving to a regular room today!  We are excited about the progress. 

Then we had a Diego moment…

Diego fell asleep in his chair. The attending physician stopped by while he was sleeping.  She said they were close to having Diego ready to move to the regular floor. The doctor turned around and left. The next thing I knew Diego had set up in his chair was standing up and said, I'm getting out of here.  Right there, Diego and I had a standoff.  I had to grab him and set him back down in the chair (he was still connected to a few wires). The nurse came around the corner and Diego started yelling with big tears rolling down his face, "Let me out of here!" Then, looked me straight in the face and said, "This is all your fault!"  Oh, good times!

Diego has made a loud enough statement around here which landed him in a private suite at the end of the floor. I'm not sure if it is because they feel sorry for Diego or feel sorry for whoever would have been his roommate. Diego made it clear that he wasn't interested in sleeping with any crying babies which is the majority of the patients on this floor.

They are glued to the TV

We also got to see Jay, his favorite nurse from last year. Jay was still wearing his Diego band and said he kept it on all year. He even wore it during the Boston marathon this past year. He said Diego was his inspiration. We love Jay!