Too Strong For His Own Good



Lap 1



Diego had his 6 week post-op check up.  His face radiated with excitement when the cardiologist told him that he could participate in all physical activities.  He was thrilled that he would be able to play soccer at recess, participate in PE at school and practice with his soccer team.  He is an amazing young man with the determination of a warrior.  He was feeling good, both emotionally and physically. 

Diego is naturally competitive.  He is not one to give up on a challenge.  When his school’s annual Jog-A-Thon event arrived, I found Diego competing with his friends and himself to be better than last year.  He told me that some of the kids were teasing him by saying that he would not be able to run as many laps because of his heart.  Diego was determined to prove them wrong.  He said that last year he ran 19 laps so this year he wanted to run 20.  As his mother, of course a red flag went up.  I reminded Diego that last year he had not gone through an open heart surgery and he could not push himself to do more than his body would allow. 

Lap 2

Diego was happy and full of energy when it was time for his class to participate in the Jog-A-Thon.  He came around from the first lap looking tired, but was maintaining a good pace.  I spotted him as he was circling around from his 2^nd lap.  As I snapped a picture I realized that he was struggling.  The closer he got I noticed that the tip of his nose was a grayish blue.  I grabbed him and said that he needed to sit down and tears filled his eyes.  I realized that his pride was getting in the way and he did not want to stop; not even if he was close to passing out.  I began walking with him and explaining that he should be proud of himself for running even though he had surgery just 7 weeks ago.  It was an amazing feat and even bigger than the fact they he had ran 19 laps last year.  He was starting to calm down and seemed to be processing my words.  We continued walking another lap, and then he decided he wanted to run for a little bit.  He was emotionally and physically exhausted, but he was able to walk and run interchangeably for the remainder of the 20 minutes.  When the whistle was blown he had accomplished 9 laps.  He quickly found a place to sit down and rest.  All of his friends were very kind to come over and check on him to make sure he was okay. 

What scared me the most about the Jog-A-Thon was to realize that Diego’s competitive nature was stronger than his natural instinct that was telling him to stop.  I continued to talk with Diego to make sure he would respect his physical limitations.  If not, then I would not allow him to participate in soccer and other competitive activities.  Diego’s response was simple, “But mom, the doctor said that I had a full release”.  My response, “Diego, a full release does not mean that you are capable of doing everything, it means that you are allowed to try within your ability.” 

The following soccer practice Diego’s team had to run a lap around the field.  I have to admit that I was nervous.  I watched the team take off and within seconds “competitive” Diego was left in the dust.  I was concerned that he would push himself too hard again.  I met up with him on the track and was grateful to see that he had good color.  He seemed to be maintaining a good pace and dealing with the fact that he would not be able to keep up with his team.   The sweetest moment was when Diego’s teammates finished; they all ran back to Diego and walked the remainder of the lap with him.  



I feel that right now the most important thing for me to do is recognize and understand where Diego is physically and emotionally so I know where I need to be.  I needed to see him respecting his physical limitations.  He has to figure it out and understand it.  He is old enough and ultimately it is his responsibility to navigate.  I’m trying to observe quietly from the stands as a mere spectator.  In reality, I am paying close attention to whether or not he continues to respect his physical limitations while also making sure that he is emotionally okay.  I admit it; I’m tired of worrying and stressing.  I’m tired of the unknown and the lets wait and see.  I also know for every ounce of tiredness and frustration I feel he feels 100 times more…why?  Because he is old enough to understand and ultimately responsible. 







Stay strong and carry on...

By the 3^rd week after we returned from Boston, Diego was feeling stronger.  I think being at home among family and friends was the best medicine for him.  He is finally able to settle in to simply being a 9 year old boy with less focus on being a heart patient. 

Unfortunately, he has subtle hints that tend to whisper in his ear reminding him of his heart defect.  I’ve noticed when Diego plays the Wii or walks long distances that he seems to have some shortness of breath.  One day this week after school, he walked a long distance around the school building.  By the time we made it to the car he had labored breathing.  Later that evening I overheard Diego explaining to his dad that sometimes he has a difficult time catching his breath.  He commented that he thought he would feel better after having his surgery, not worse. 

I try not to hyper focus on any of Diego’s symptoms while at the same time being aware of how he is doing physically.  It is my understanding that the shortness of breath will continue due to the restriction created by the PA band.  Basically it is an indicator that the band is working to strengthen his left ventricle.  His 6 week post-op checkup appointment is scheduled for October 10, 2012.  Diego’s main objective is that the cardiologist will release him to play soccer.  We have been occasionally attending his soccer team’s games this season.  On the way home from the most recent soccer game, Diego commented that he desperately wants to start playing soccer again.  The closer it gets to his checkup the more eager he is to play soccer.  Luckily, he seems to know how to self manage his activity level based on how he feels.  We realize that it could be challenging for Diego to deal with the physical limitations he may encounter once his activity level increases after his post-op checkup. 

Of course, I also worry about his emotional well being.  He has the mentality to handle the situation, but that does not always mean that he is content with it.  Sometimes he is entitled to feel frustrated with the issues his heart defect creates.  He is being forced to cope with things that even as an adult I struggle with how to handle.  I feel when Diego is having an emotional low that is my cue to be strong for us both.  Those are the hardest moments; when there are only one set of footprints in the sand.  What he doesn’t realize is that I pull my strength from him.  It takes my entire being to reassure him that all is well with his heart.  The greatest moments are when we are walking together and he reaches to hold my hand.  In that moment, there seems to be peace surrounding us.  I cherish those moments more now than ever before.  It is the awareness that he is at peace that I appreciate most.  As a mother we do not want our young children to worry about whether or not their heart is strong enough to carry them across the soccer field.  When he has that skip in his step and smile on his face I relish in that moment because his greatest concern is whether or not Mrs. Kathy is serving the crispy chicken sandwich in the cafeteria, as it should be! I am grateful that Diego has the ability to overpower his emotional frustrations and continue moving forward.  I’ve always trusted that God knew what He was doing when He gave Diego the heart of a warrior. 

Diego's "Storypeople" creation he made during his healing

Crashing In

Over the last week I have found great irony in the turbulent flight from Chicago to Tulsa.  Tulsa was experiencing 70 mph winds during our landing.  It was a rough flight and at moments I wondered if we were going to be crashing in, falling from the clouds.  Throughout the first week or so following Diego’s discharge, a flood of emotions surfaced.  I realize now looking back that not only did Diego and I physically have a rough landing, but an emotionally rough landing as well.  As if we were coming in on two flat tires.

I was able to continue moving forward throughout the weeks leading up to the surgery and during our time in Boston because of an adrenaline high.  This adrenaline kept me wide awake for 1 week straight even though I had very few hours of sleep.  I was able to “hold it together” and take each moment as it came.  Not looking back nor looking ahead.  I was simply living the moment as it presented itself.  It seems logical to me now that eventually all the emotions would catch up with me.  The flood gates would open and crash over my life.  During the initial days following Diego’s discharge I felt as if I was drowning trying to keep my head above the water.  I desperately wanted to crawl into a hole and hide.  I kept thinking if I can just escape within myself the flooding waters would pass me by.  I did not want to talk about it nor did I want to blog about it.  I simply wanted it to disappear.  It is funny how I subconsciously thought if I cover my eyes, ears, and mouth that the ugly monster will no longer exist.  I suppose it is similar to how a baby believes if they cover their own eyes then others will not be able to see them. 

The first week home Diego was physically recovering well, but emotionally he was struggling.  He was asked by a friend, how he was feeling and he said with an upbeat reply and a smile on his face, “I feel good!”  Then she asked, “Do you want everyone to stop talking about it” and Diego replied meekly, “Yes, kind of”.  He had been brave for so long and he was also coming down from the adrenaline high.  Diego would show off his incision with great pride to anyone that asked about it.  Then at home, he would complain that his scar could be seen when he was wearing his school uniform polo shirt.  He recognized what he should be feeling was bravery, confidence and pride.  But what he was truly feeling was weak, timid and defeat. He too thought if he could just cover it up it would no longer exist.  Diego is at an age where he is completely aware of what he is up against, therefore, it makes sense that he is struggling with it emotionally.

Some of the lyrics from Katy Perry’s song “Wide Awake” have struck a chord with me and possibly express these emotions better than I can. 

I'm wide awake
Thunder rumbling
Castles crumbling

I am trying to hold on

God knows that I tried
Seeing the bright side

But I'm not blind anymore...
I'm wide awake
Yeah, I'm falling from cloud 9
I'm crashing from the high
You know I'm letting go
I'm falling from cloud 9

Of course these lyrics can have multiple meanings, but to me it expresses the feeling of trying to hold on and focus on the bright side while crashing in from our adrenaline high. 

Homecoming Post-Op Day 10

Friday, September 7, 2012-10^th day following the PA band surgery

Diego had an 8:00am appointment at the hospital.  He was given the approval to return home and follow up with the cardiologist in Tulsa next week and have his chest tube stitch removed at that time.  After the appointment, we had a few minutes to drop off some thank you cards that Diego made for his two favorite nurses from the PICU-8 South. 

We quickly made our way to the Boston Logan International Airport to catch our flight back home.  Diego wore his signed Blitz Soccer team jersey both to Boston and for the return flight home as well.  It was a rough flight all the way home, especially when we were arriving at the Tulsa International Airport.  There were 70mph winds in Tulsa and the surrounding areas.  Luckily, Diego was asleep through the roughest part of the flight.  All passengers, myself included, were frazzled by the intense turbulence.  We were grateful to be safely on the ground. 

Diego and I expected my sister and children to be at the airport awaiting our arrival.  Much to our surprise, as we exited the airport’s secure area, Diego was overwhelmingly greeted by an enthusiastic group of friends and family!  It was amazing to say the least.  I don’t know why, but I continue to stand in awe by another glimpse of God's divine grace in our lives.  To be surrounded by such love, support and devotion is a true gift that I will forever embrace.

The Yawkey Inn Post-Op Day 8

Wednesday, September 5, 2012 – 8^th day following the PA band surgery

This morning was the first day it had rained since we arrived in Boston.  I must say that I was a bit relieved to simply stay inside curled up in my pjs working while Diego watched cartoons.  I think Diego and I were both feeling some of the stress lifting this morning.  It is amazing how you just keep moving forward under the pressure never realizing how exhausted you are emotionally and physically.  This morning it felt like I exhaled for the first time in almost one year.  I know that we still have another battle to fight, but for now it felt good to just breathe.

Well deserved Captain Diego!

Diego loves history; therefore, he was very interested in seeing Boston.  We decided to take the Ducktours this afternoon after the rain stopped.  We thought this would be an easy way for Diego to see Boston and learn about the history of this great city.  The “conducktor” even let Diego drive for awhile!  By the time the tour was over, you could see in Diego’s face that he was exhausted so we took a cab back to the Yawkey Inn for the night.  Diego truly enjoyed his afternoon excursion. 

8 East Post-Op Day 7

Tuesday, September 4, 2012 - 7^th day following the PA band surgery

Diego did not sleep well last night.  He was awake sitting up in the bed a lot complaining that he was hot.  Yesterday evening, he developed a rash on his lower back; most likely from the heat and moisture of being in the bed.  During the night, the rash was irritating him so he was unable to sleep well. 

Leaving the Hospital

Diego was relieved to be able to take a shower this morning.  Afterwards, the ultrasound tech came in to do his echo around 9:00am.  It was approximately 2:30 when Dr. Marx and the nurse came in to see Diego.    Dr. Marx, the cardiologist, was very pleased with Diego’s echo.  He is optimistic that Diego’s left ventricle will be prepared for the Double Switch surgery within 1 year.  Diego will be seen by the cardiologist in Tulsa routinely for checkups to monitor the left ventricle.  Once the cardiologists feel the left ventricle is ready for the anatomical repair then we will return to Boston for the Double Switch operation.  We estimate that this will be sometime during the summer of 2013. 

By 4:00pm Diego was officially discharged from Children's Hospital Boston.  We will need to remain in Boston for a few more days to ensure that Diego is ready to fly home.  Diego will be seen by the doctor for one last echo on Friday then we will return home over the weekend. 

8 East Post-Op Day 6

Monday, September 3, 2012-6^th day following the PA band surgery.

It was a long night of multiple trips to the restroom.  This morning around 10:00am they sent Diego for another x-ray to check on his lungs.  He is making progress, but he still has fluid in the lungs and the bottom of his lungs needs to become more elastic.  After the x-ray Diego and I went outside to the garden and spent an hour enjoying the beautiful weather.  Then we found an old Pacman game to play in the family entertainment center.  I think this was the first time I ever played an electronic game better than any of my children!  The last stop before returning to the room was the vending machine to buy a Mug root beer and chips.  Diego wanted something different to drink since the nurses are really encouraging him to drink a lot of fluids. 

We were told that Diego would need another echo on Tuesday morning.  If the left ventricle looks good then he would be discharged from the hospital.  The doctors want him to stay in the Boston area for the follow up appointment instead of returning to Tulsa for the follow up as originally planned.  They are continuing to watch his left ventricle to ensure it is capable of handling the increased pressures from the PA band.   

Sweet Dreams