December Cardio Check-up

Diego was gradually gaining a substantial amount of weight and he was continuing to struggle with physical activity.  He remained frustrated with the fact that he thought he would feel better after the surgery, but that was not proving true.  Admittedly I thought, at 3 months post surgery, I would see some improvement in him.  Therefore, I decided to schedule an appointment with his local cardiologist, Dr. Kimberling.   Dr. Kimberling was very reassuring and compassionate about my concerns.  He did a thorough examination of Diego and felt confident that Diego was not having any heart related complications.  I was definitely relieved.  It was at this time that I started to accept that it was simply going to be a slow process for Diego’s body to recover from his surgery and adjust to the increased pressures created by the PA band.  I suppose I was simply naive in believing that since he was a child he would “bounce back” quickly.  Nonetheless, I took a deep breath of relief and continued helping Diego push forward. 

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

8 East Post-Op Day 5

Sunday, September 2, 2012-5th day following the PA band surgery.

Diego is on Lasix to help with the excess fluid.  He spent a lot of time in the restroom due to the Lasix and the amount of fluids they need him drinking.  The general theme from Diego this morning is, “I want to go home.”  I think he is struggling for 2 reasons.  First, his dad is leaving this evening to return home.  And second, he knows that his soccer team is playing this weekend in a tournament.  Thankfully, his remote control car has made him smile and helped to get him up and moving around more.

The nurse moved Diego into a different room this evening.  Diego had been sharing a room with an infant.  He was struggling with the baby crying throughout the day and night.  Hopefully, Diego will be happier in his new room.  By the evening, I could tell that he was getting around a lot better.  He was able to get in and out of bed on his own with no assistance.  He did not ask for any pain medicine this evening either and seems to be doing just fine without it. 

8 East Post-Op Day 4

Saturday, September 1, 2012-the 4^th day following the PA band surgery.

Diego woke up around 3:30am, the nurse came in to take vitals and gave him Tylenol and Codeine.  He slept until 7:30am and once he was awake he quickly recognized our pattern for the day would be to eat, drink, walk, lung exercises, vitals, medicine, and repeat. 

We were sent downstairs with Diego and a wheelchair for an x-ray around 9:30am.  The nurse told Diego to walk for as long as he could then he could ride in the wheel chair when he was tired.  After we finished with the x-ray, Cesar and I took Diego outside to the garden for some fresh air.  This was the first time he had been outside in 4 days.

 

We returned to his room for an EKG at 10:30am and around 10:45-Dr. del Nido stopped by.  He said they will want another echo before being discharged, possibly on Monday.  We will then need to schedule another appointment a few days later to come back in for a check-up/echo before returning home.  The x-ray showed that the bottom of his lungs were still collapsed which meant we needed to aggressively continue with our daily routine of eating, drinking, walking and lung exercises.  By the end of the day, I could see huge strides in Diego’s body functioning independently. He was still struggling with pain, gas and nausea, but he was definitely progressing. 

PICU Post-Op Day 3

Friday, August 31, 2012-The 3^rd day following the PA band surgery.

Since Diego was off the sedatives and had the ventilator tube removed he was awake more and trying to talk.  His nurse, Sarah, was trying to manage his pain and nausea.  One seemed to trigger the other so this proved to be a bit of a balancing act. 

Around 12:00pm, the ultrasound tech came into Diego’s room to do the echo.  While she was scanning Diego, Dr. del Nido came in to check on him.  I could see in del Nido’s face that he was very pleased with Diego’s progress from the previous echo on Wednesday.  It was really touch-and-go for the first 36-48 hours after surgery.  Diego’s left ventricle was struggling to cope with the added pressure from the band. If his LV was not capable of the extra workload then they would need to go back in to make adjustments.  Dr. del Nido said, “He made it through the valley and he looks much better.”  He gave the okay for Diego to be moved to a regular room on 8 East.



Removing IV



Diego still had IV lines in his neck, both hands and feet.  After the echo, at approximately 1:00pm, the nurse removed two of his IV lines.  The most difficult part about removing the lines was the adhesive they use.  It is sealed tightly to his skin and hair and sometimes the skin was  folded underneath.



Sarah





By 2:00, it was time to start working with Diego to get him up, moving around, eating, drinking and doing lung exercises.  Basically, we were trying to give his body a jump start so things would start working again. 



Sarah moved Diego into a regular room on 8 East at 3:00pm.  It was during this move that Diego seemed to hit his low emotionally. He was frustrated with the fact that he has to stay in the hospital a few more days.  Once he is discharged, we will need to stay in the Boston area a few more days so he can return to the hospital for a follow up appointment before returning home

 



Diego tried to dig his heels in and refused to drink, eat, and walk.  That forced the two of us to have a power struggle.  If you know Diego and I well, then you know that we are both equally headstrong.  When the two of us meet at a crossroad, I have to remind Diego that I am still “the mom” before we can move forward.  I told Diego, “The only way they are letting us leave is for you to start walking, eating and drinking.  So the sooner you start doing that the sooner we get out of here.”  I think I got my point across.  I left the room to take a little break and when I returned; his nurse looked up at me and said, “Are you mom?”  I nodded yes and she said, “Oh good, because I was just asking Diego if I could take the IV line out of his foot and he told me I had to ask his mom for permission before he could do anything.”  I laughed and said, “Yes, you can take the IV out.”  Now that we have worked through the low point, I think we can complete our next task of being discharged from the hospital!    

Day 3







PICU Post-Op Day 2

Thursday, August 30, 2012-The 2^nd day following the PA band surgery. 

Diego remained sedated and was able to rest well through the night.  His nurse, Jay, wanted to see Diego’s Speech Arts video before his shift ended.  I played the video in the back of the room behind Diego’s bed.  After we watched the video, we turned around and saw that Diego had his hand up in the air.  We walked around to where he could see us and he was mouthing again.  Jay immediately confirmed that he had watched the video.  Diego smiled and nodded his head. 

By 8:00am, Diego was asking for a pen to communicate with us again.  He wrote the word “sore”.  We started to guess what part of his body was sore; it was his backside.  Denise, the day nurse, turned him on his side to relieve the pressure.  Diego noticed my pink blanket and pointed towards it.  We thought he was cold.  Denise said if his temperature rises we will have to take the blanket off.  Diego pulled the blanket up to his face; it was clear that he just wanted to cuddle.  I asked if he wanted his elephant, Ellie, and he nodded a big “yes”.  Then, he started pointing at my lips.  Yet again, I found myself playing the guessing game.  Were his lips dry, does he want a drink (which he can’t have), was the tube hurting?  Diego reached for my hand and tried to pull me close.  I leaned in then realized what he wanted.  I asked, “Do you want a kiss?”  He nodded another big “yes” and waved for his dad to kiss him too.  Diego made one last comment before drifting off to sleep. He made a bowl shape with his hands or so I thought it was a bowl.  He replied to me by shaking his head “no”, and then wrote the word “book”.  I asked, “Do you want me to read to you and with the nod of his head, he replied “yes.”  Diego had been sedated for nearly 2 days and he was craving the familiar comforts of love.  The soft feel of a warm blanket, the sound of your mother’s voice, the tender touch of a kiss are the unique characteristics we yearn for that make us so much more than just a living organism.  I feel as if Diego’s heart is mending both physically and emotionally.

I was able to listen to the doctors during their rounds at approximately 10:00am.  They decided that Diego needed to receive a dose of versed in order to put his foley line in and empty his bladder.  Once this has occurred, they will reduce the sedation medications and begin weaning him off the ventilator.  By 11:30am the foley line was in.  Shortly after, Dr. del Nido stopped by to check on Diego and gave the official word to take him off the ventilator. 

The respiratory nurse slowly began weaning Diego from the ventilator.  By 1:30 he was more alert and receiving minimal support from the ventilator.  His mouth and tube were filling with mucus.  The nurse worked to suction out his mouth and the tube.  You could see the fear in his face as he was approaching the unknown and each breathe he took was definitely a struggle.  Once the line was clear of all mucus, the nose tube was removed, which drained the acid from his stomach.  Then, the ventilator was turned off and the nurse gave a strong pull to remove the tube from his lungs.  Diego was left with the job of breathing on his own.  I watched him struggle; the first few breaths were rough, very raw and irregular.  It is a sound that will forever resonate deep within my soul.  It was a sound of both fear and beauty.  It was a moment where I recognized how fragile life is on such a deeper level than ever before. Slowly, he developed a steady breathing pattern that allowed him to become calm.

The next thing I knew, big tears filled his eyes.  I worried that he was in pain.  When I asked, “What’s wrong?”  His tears began rolling down his cheeks.  Sobbing he said, “I’m just so grateful for you, dad and everybody here for taking such good care of me.”  His voice was weak and course.  It was a struggle to speak.  He looked over at Denise and said a frail, “thank you.”  It was in that moment that I realized the depth of the burden Diego had carried for the past 8 months, worried that he might die. I removed a previous post from the blog several months ago because I decided it was not the right time to post it.  But tonight, as I set here processing the day, I think it might help to reconnect this circle of emotions.  Even though he was constantly reassured that he would be fine, in his own intellect he was not convinced that he would live to be 100 years old.  He was headed into a storm not sure he would survive.  Brandon (my Iraq warrior) and Diego (my heart warrior) carry a special bond that began on the day Diego was born.  Diego was born on Brandon’s 16^th birthday.  Brandon sent the following message to Diego on the day of his surgery.

Be of good courage, and he shall strengthen your heart, all ye that hope in the Lord.  Psalm 31:24

PICU Post-Op Day 1

 Wednesday, August 29, 2012-The 1st day following Diego’s PA band surgery. 


PICU Post-Op Day 1

 

Mom & Diego

Diego seemed to be in some pain so they continued to keep him heavily sedated.  They did a chest x-ray at approximately 5:00am.  The day nurse, Tony, shift began at 7:00am.  The x-ray showed that the stomach tube was not secreting enough of the mucus so they made some adjustments to the tube and suctioned more of the mucus from his stomach. For obvious reasons, Diego did not care for this procedure. 

The surgeon, Dr. del Nido, visited Diego around 8:00am.  He ordered an EKG and an echo cardiogram.  He wanted to view the results of the 2 tests before he made a decision about removing Diego from the ventilator.  Dr. Marx, the cardiologist, visited Diego at approximately 9:30am.  He mentioned that they did notice some leakage in the mitral valve after the band was placed on Diego’s pulmonary artery.  They will definitely watch this for any possible concerns. 

By 10:00am, Tony had started the EKG and the echo was performed at approximately 1:00pm.  At 3:45pm Tony increased his pain medication to take out the chest tube.  The chest tube is inserted below his incision and its purpose is to remove excess blood from around the heart.  By 4:45pm Tony and another nurse had quickly and successfully removed the chest tube. 

After that, she began reducing sedation medicine so Diego would start to wake up.  The plan at that point was to start weaning him off the ventilator.  The goal is for Diego’s body to start doing the work rather than the medicines and machines.  By 6:30pm Dr. del Nido had checked in and made the final decision that he did not want Diego off the ventilator tonight.  He did not feel that Diego’s left ventricle was quite ready to handle the work load on its own.  So, for the night, they started him back on his sedation medicine. 

Unfortunately, Diego had started to arouse from being off the sedation medicine.  The night nurse, Jay, came in around 6:50pm and the two nurses together were working to get the right combination of medicine to sedate Diego again.  However, Diego had a different plan.  He was awake and planning to stay that way and was becoming very frustrated with all the tubes.  He was trying desperately to tell me what he wanted.  Of course, he was unable to speak and I could not read his lips because of the tube.  By this point, he was disgusted with everything.  I said, “Diego, I know you are angry” and he shook his head “no”.  So, I said, “Are you frustrated” and he nodded his head “yes”.  I tried to calm him, but I could see his frustration was seeping out of his pores. 

Dr. Marx, the cardiologist, stopped by to check on Diego around 8:30pm.  We were still struggling to get Diego heavily sedated again.  Dr. Marx reported that the tricuspid regurgitation changed from severe to mild because of the band.  He said, “It is impressive to say the least”.  Also, his left ventricle has really expanded and pushed the right ventricle back over.  The band is doing impressive work, but Diego just isn’t quite ready to do the work alone.  He feels it will get there and possibly even be ready to start weaning him off the ventilator tomorrow.  He agrees with del Nido that it is important to take it slow.  



Diego writing to communicate




100 Speech...Dr. Jay



I asked Dr. Marx if he had a minute to view Diego’s speech before he left.  He was very enthusiastic about the video.  Then, Diego began trying to tell us something and he became overly frustrated again because we did not understand.  Jay was working to calm him and to figure out what Diego was communicating.  He concluded that Diego wanted a pen to write it down.  Since Diego was becoming so upset Jay got the pen and paper and Diego began writing.  As hard as we tried, we could not figure it out.  It was difficult to read because Diego was drugged from the sedation medicine. At that point, Diego began crying and started throwing up a little.  Jay had to suction his breathing tube, which didn’t go over too well with Diego.  He gave him something for anxiety and that seemed to help a little.  It was challenging, but finally Jay was able to get Diego heavily sedated again. After everything calmed down, Cesar and I were able to translate Diego’s writing.  It reads, “100 speech (arrow pointing) Dr. Jay.”  The arrow was pointing at Jay.  Diego wanted us to show Jay the speech.  We now realize that Diego is very fond of his night nurse…Jay, you are awesome!

Pulmonary Artery Band Surgery



Ninetendo DS





Nasty Tasting Medicine

  

Mom in Scrubs!




And he's snoozing...

 We arrived at the hospital at 12:00pm on Tuesday, August 28^th for Diego’s PA Band Surgery.  We were delayed an hour because the surgeon’s first surgery took longer than expected.  Diego was called back to take vitals around 1:00pm.  Then off to the operating holding room around 1:45 where he changed into his “johnnies” (as I learned the hospital gown is called).  The nurse definitely knows how to keep a 9 year old boy pre-occupied.  They let him play with an iPad and Nintendo DS while we waited for the anesthesiologist.  Once the anesthesiologist came, they gave Diego medication to help him drift off to sleep.  The anesthesiologist hung around waiting and waiting for the medicine to kick in, but the more they asked him questions the more he talked.  Somehow, Diego managed to tell the 3 anesthesiologist every detail of how Cesar came to the United States, how Cesar and I met and were later married.  After the end of that conversation the anesthesiologist realized that this boy wasn’t going to sleep on medicine alone.  Therefore, I had the pleasure of putting on scrubs and going into the surgical room with Diego.  They were all very sweet and let me stand beside Diego as they placed the root beer flavored gas mask over his face.  Within seconds, Diego was out cold!  The lead anesthesiologist said there is no way he is already out.  So they called out his name and there was no response of any kind.  That’s it; just like that, Diego was snoozing! 

 We received the first update around 4:00pm that the incision had been made.  Approximately an hour later, the nurse reported that Diego was doing well, stable with no complications.  One last update from the nurse around 5:45 said that the surgeon was wrapping things up and would be out soon to talk with us.  Dr. del Nido came out sometime after 6:00.  He said that Diego did very well with no problems.  He saw a significant amount of leakage in his tricuspid valve, which he said confirmed Diego's symptoms of low stamina, sluggish during physical activity and fatigue.  Diego's left ventricle pressure was 38 before he placed the band on his pulmonary artery.  Once he placed the band on Diego’s left ventricle he had a blood pressure in the low 70s, which Diego tolerated well.  Dr. del Nido tried to increase the tightness of the band, but Diego did not respond well.  The surgeon is pleased with a left ventricle blood pressure in the low 70s.  Diego's left ventricle pressures will have to get up into the 80s before he will be considered for the Double Switch surgery.  This could take anywhere between 6 months to 2 years.  He said they will keep Diego sedated for a while to monitor his tolerance of the higher blood pressure.



After Surgery in PICU

 It was probably 7:45pm before they had Diego in the Pediatric ICU.  We were thrilled to be able to finally see him.  Shortly thereafter, Diego's blood pressure dropped significantly and gave us a little scare.  They asked us to leave the room while they worked to stabilize him.  Dr. del Nido came in and adjusted Diego's medicine and requested a blood transfusion.  They explained to us that things would be a little rough for the next 24-48 hours while Diego's left ventricle adjusts to the extra work load.  Around 10:30 his blood pressure became too high.  Again, they adjusted his medication and had to restrain him because his feisty nature was coming out.  He was trying to pull the tubes out, which in a sense is a good thing.  It shows that he is the true heart warrior that we have always believed him to be!

Pre-op Appointment

We arrived at Children's Hospital Boston at 7:30am on Monday, August 27th. It was a very long day. Diego had several procedures done in the morning; chest x-ray, echo, EKG, vitals, and blood work. In the afternoon we toured the ICU; then met with the surgeon, anesthesiologist and cardiologist.  Diego seemed to be emotionally strong and content.   I was very impressed with his calm demeanor during the blood draw.  He was engrossed in watching both the prick and the draw.  He was not the least bit phased by it.  In fact, as the blood was filling the tube, he said, "how cool!"

During the middle of all the pre-op procedures, we received an exciting phone message.  Diego’s eyes were smiling as he listened to the message.  He was selected to be on the American Heart Association printed materials for the upcoming year.  At this point, we don’t have any additional information, but it all stems back to Diego and the Jump Rope for Heart fundraiser at Eisenhower this past February.  The timing was perfect; it lifted our spirits during a stressful day!

Diego has to be at the hospital at 12:00pm Tuesday, August 28^th for the PA band surgery.



Hello Boston



We arrived in Boston at approximately 2:30pm on Sunday, August 26th. We had a smooth flight with no problems. Luckily, American Airlines was able to put all 3 of us on the same flight since originally Cesar was on a separate flight from Diego and I. We checked in at The Yawkey Inn then got a bite to eat. We walked to the grocery store to get a few things then back to the Inn. The weather is absolutely gorgeous! We were definitely tired, but it was a good day.

A Medal for Bravery

Above is a picture of the soldier that became my clean eating inspiration.  My nephew, Brandon Wayne Dudley, returned from Iraq this past November.  Brandon had drill on Saturday, August 25^th during our family dinner.  He was able to join us at the very end of the day.  Discreetly, in a separate room from all the chaos of the family buzz, Brandon set with Diego and gave to him the medal that he earned while deployed in Iraq.  He explained that the medal is given to soldiers for their bravery in combat.  He said, “I earned this medal for doing something that was hard to do.  Basically, I was in the right place at the right time.”  In other words, he did not seek this mission out, but rather it was bestowed upon him.  Although no one in the family will ever know what he did to earn the medal, I doubt it was an easy task.  And, certainly not a task that most people would feel they were in the “right” place.  In my opinion, that is the sign of a brave warrior.  Brandon continued to explain that he wanted Diego to have his medal because Diego was facing a challenging time ahead that required him to be brave.  I hope that Diego will not see his mission as a hardship, but rather an honor to be a part of a select few called to carry out a task that was hard to do.

A Warrior’s Creed

I am a Warrior and a member of a team

I serve the people of the United States, and live the Army Values

I will always place the mission first

I will never accept defeat

I will never quit

I will never leave a fallen comrade