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! 

Post Op PICU Day 3

Thankfully, all the prayers from everyone seemed to have brought peace to Diego throughout the night. He slept okay, had a few ice chips and kept them down.  This morning, he has a sinus rhythm (he is setting his own normal heart rhythm) so they have the pacemaker set as a backup if his heart rate falls below 60.  During the night they started backing off the IV blood pressure meds and started oral BP meds this morning. He has kept that down so far too. He is still sleeping so not moving around much and pretty quiet and peaceful at this point.  

During the day, he has made progress.  The chest X-ray showed improvement in the fluid between his lungs and chest wall and he is continuing to keep small amounts of fluids down.  All of this means, they are ready to start pushing him.

They moved him into a chair. It was very painful for him, but a needed move to get him progressing. They reduced his oxygen and he is able to keep his oxygen saturation in the upper 80s lower 90s. It really needs to be in the upper 90s. So, he has to work on deep slow breaths which he finds painful in his chest.  The pacemaker is supplying occasional backup for him when his HR drops below 60.   His blood pressure still goes a little high (142/74) when he moves around. He will need to stay in PICU one more night. Basically, he has to move even though it is painful. 

They took out the chest tube at 4:00.  He was anxious about having this done.  He wanted it out, but it is a large tube so he was afraid of the pain.   I'm learning Diego is a lot like his mother. He likes to know everything...the good, the bad and the ugly.  He had me take before and after photos of his tubes so he could see exactly what he was dealing with. He didn't like it, but needed to know. He did great. They gave him morphine just before the procedure (which is like yanking on a water hose) so Diego fell asleep as soon as it was over.

I took the opportunity to walk back to the Yawkey Inn to shower (I hadn't done that in awhile...ugh). We are finally starting to see the light at the end of this step. I'm trying not to get ahead of myself just focusing on the here and now. I spoke with my girls this evening, they seemed really happy so that was good to hear. 

Diego quote of the day…

Diego:  “Mom, when do I get to go home?” 

Mom:  “Diego, we have to take it one step at a time.  The next step is they will be moving you to the regular floor tomorrow.”

Diego:  “I don’t want to take steps…I want to take the elevator.”  

Post-Op PICU Day 2

Around 4:30am the nurse started reducing Diego’s pain meds so he would wake up.  By 5:00am he was awake and within an hour he was off the ventilator. 

He's Awake!

Flying Solo!

Once awake, it didn’t take long for Diego to become agitated and frustrated.  A Diego quote…

“When is she (his nurse) getting off the phone?” 

I ask, “Why?” 

Diego raises his hands up, looks around and says, “For her to get all of these tubes out of me.” 

Oh, it’s going to be a long day.

He's moving around more which has caused his blood pressure to rise. The highest I've seen it today is 148/76.  Therefore, they've increased his blood pressure meds. They need him to come off those meds a little before he can try walking.  He is seeing a lot of double and blurry vision.  He becomes very nervous when his BP spikes.

He is not remembering information so we are replaying the course of the last 2 days over and over.

His oxygen saturation drops rapidly without his oxygen (nasal piece). Eighty-one is the lowest it has dropped before getting the oxygen piece back in place.

He is still on Lasix and urinating a lot! 

He's been nauseated and thrown up some throughout the day. He ate a popsicle around 2:00pm, but was unsuccessful at keeping it down.  In fact, Diego has been unsuccessful at keeping any oral fluids down. In general, he has felt crummy all day. Around 5:30 he threw up the Tylenol he had been given for a slight fever. After throwing up, his oxygen saturation levels dropped into the upper 70s (with oxygen assistance). After a chest X-ray it was determined he has Pneumothorax (air in between the lungs and chest wall). They are trying some oxygen therapy then will X-ray him again in approximately 4 hours. Hopefully we will see improvement. 

The follow up X-ray didn't show much change. They are going to keep him on 100% oxygen over night and X-ray again in the morning. If it becomes worse they would need to put him back on the ventilator. So although this isn't great news it is better than the alternative.

Dr. del Nido stopped by earlier and said he isn't leaving ICU until he makes some changes with the pacemaker and lung. Hopefully tomorrow we can get Diego up and into a chair since moving around helps him improve overall.  Unfortunately, his blood pressure is still elevated. It's all such a balancing act. 

Tonight, before Cesar left the hospital, I was standing beside Diego holding his hand. He looked up and asked, “Where’s dad”. I pointed to Cesar standing at the foot of his bed. He asked his dad to stand on his right side and hold his hand. Then Diego asked us to pray for him.  Diego's oxygen saturation dropping and the doctors hovering all around him to help him breathe was very traumatic for Diego. Once everything calmed down he asked several times if he was going to die. I told Diego many times in preparation for this surgery that the greatest thing he can do when he is afraid is to pray and remember that God is with him and understands his suffering. 

Thank you for your constant love prayers and support. It means more than you will ever know.

Post-op PICU Day 1

Dr. del Nido stopped by early this morning.  He said the chest x-ray and everything else looked good.  He is ready to start weaning Diego off meds and machines.  This will be a very slow process with big leaps forward and occasional small steps backwards.  Overall this is a very good sign.

The first machine to be disconnected was the pacemaker.  They would like to see Diego’s heart rate stay at 80 or above.  Diego’s HR is hovering around 77.  They are optimistic that Diego has a naturally slow heart rate. 

He had a nice treat this morning, his nurse brushed Diego's teeth and cleaned his mouth for himJ

Diego’s good buddy, Forrest’s mom stopped by when passing through Boston today.  Just before Marlow arrived (approximately 12:00pm) the nurse stopped the paralysis meds.  While Marlow was bedside with me they removed Diego’s left atrial line (approximately 1:30pm).  Diego is still pretty quiet.  He is not opening his eyes or moving much at all.  The nurse is happy with the slow progress and said while he is resting he can work on draining more fluids.  

Early in the evening, Diego had some abnormal heart rhythms.  His HR had been 67 for most of the afternoon then jumped to the mid 90s.  They performed an EKG and said it was junctional rhythm.  So he is back on the pacemaker.  They are pacing his heart over the junctional rhythm so his current pacing HR is 111. 

He is still highly sedated so he isn’t really moving around much.  They are waiting to get more fluid off him before reducing his meds and removing the ventilator.    If his fluid number is in the negative this will help him breathe on his own easier.  We can see on the monitor that he is already breathing a little on his own.  

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.