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

  

Hip, Hip, Hooray!!!

At the end of the school day on Friday, August 24th, the Eisenhower students and staff organized an all school assembly to give Diego a heartfelt farewell.  Mme Barnes presented Diego with a package of letters from every EIS student.  He was told that inside the letters were uplifting words of encouragement for him to read after his surgery.  At the close of the assembly, the entire school gave Diego three Earth shattering Hip, Hip, Hoorays!!!  It was astonishing to say the least.  The image that will be forever engraved in my memory is the moment during the assembly where I said a few words of gratitude and began to tear up.  A very humble and sweet Diego walked over to me and put his hand on my shoulder to offer his support to his mother.  I stand in awe at his bravery.