Friday, August 31, 2012

PICU Post-Op Day 3

Friday, August 31, 2012-The 3rd 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




Thursday, August 30, 2012

PICU Post-Op Day 2

Thursday, August 30, 2012-The 2nd 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 16th 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

Wednesday, August 29, 2012

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!

Tuesday, August 28, 2012

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 28th 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!

Monday, August 27, 2012

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 28th for the PA band surgery.


Sunday, August 26, 2012

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.


Saturday, August 25, 2012

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 25th 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
  

Friday, August 24, 2012

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. 

Thursday, August 23, 2012

The Grand Soccer Finale

Diego’s soccer coach organized a soccer scrimmage for August 23rd, only a few days before our Boston departure.  This was the last game Diego will be able to participate in for a while.  He played hard and thoroughly enjoyed every moment of it.  Diego’s team won the game 2-1 against a tough group of girls.  At the end of the game, Coach Britt presented Diego with a team jersey that had all his teammates’ signatures on it.  As we walked off the field, Diego immediately decided that he was going to wear the jersey on the plane, both to and from Boston. I think it is wonderful that Diego recognized that this would be a meaningful way to feel the energy and support of his teammates at the beginning and when he returns home from his successful trip to Boston. 

Tuesday, August 21, 2012

A Heart Warrior

I want to give a huge “shout out” to Jacob Palmer of Little Moments Photography.  Jacob gave my family the wonderful blessing of photographing Diego before his first heart surgery.  He did a fabulous job portraying the spirit of my Heart Warrior!  Thank you Jacob and Jessica for blessing our lives and being a part of Diego’s heart journey! 
facebook@littlemomentsphotographbyJP













facebook@littlemomentsphotographbyJP

Monday, August 13, 2012

The Big Birthday Bash!

Diego’s 9th Birthday Party
Since Diego’s 9th birthday is during his 6 week post surgery recovery period, he asked if he could have his birthday celebration before his PA band operation.  He wanted to do something wild and fun.  We decided to have a swimming party on August 13th.  He invited all the boys from the Eisenhower 3rd grade class and his Blitz soccer team.  It was such a wonderful time for me to relish in the moment of watching this group of energetic boys have a blast.  The simple things in life that you sometimes forget to sit back, relax and appreciate, like a 9 year old boy swimming and hanging out with the best of friends.   

Sunday, August 12, 2012

Church of the Madalene


             
And the angel of the Lord came again the second time, and touched him and said, arise and eat, because the journey is too great for thee.  And he arose and did eat and drink, and went in the strength of that meat forty days and forty nights unto Horeb the mount of God.  1 Kings 19:7
This was the first reading from the August 12th Mass.  My heart smiled as I felt these words embrace my family.  After each Mass on the weekend of August 11-12th the parishioners hosted a bake sale.  The Madalene Social Concerns Committee sold “Team Diego” wrist bands as a reminder to pray for Diego and his doctors on a daily basis.  In addition, the Women of the Madalene sold their Tastes of Yesterday & Today cookbooks throughout the bake sale.   All proceeds benefited Diego’s Heart Fund to assist with the medical and travel expenses to Boston. But even more, the parishioners of the Madalene saw that Diego’s heart journey was too great for us to walk alone.  Their gift provided nourishment for our soul that will strengthen us along Diego’s heart journey.  We are grateful and blessed to be a part of the Madalene parish. 

Saturday, August 11, 2012

Less than Perfect

This morning, Saturday, August 11, 2012 Diego’s soccer team had a scrimmage.  On the way home from the scrimmage Diego was struggling with the fact that he would not be playing in the fall soccer season because of his upcoming surgery.  He asked, “Mom, did you want to have a child with a defect”.  That question hit me hard, right in the stomach.  During the years when my husband, Cesar, and I were dating I told Cesar that if a child had to be born less than perfect that I was one of God’s warriors…I could handle it…I could take care of a child with a defect.  I don’t know why I felt that way, but I did.  So when Diego asked me this question I was reminded of that conversation between my husband and I over 15 years ago.  I told Diego that no mother ever wants their child to struggle with any type of defect, but that I always knew that I was strong enough to help my child if they were not perfectly created. 
Interestingly, last night my Dad and I were watching a YouTube video of how the human heart is developed in utero.  At the end of the video my Dad and I both commented that given the precise development that must occur that it is amazing that any heart develops perfectly.  The human body is truly a miracle and should be cherished and appreciated.  If you have children, whether they are perfectly created or not, please hold them and know that they are a precious gift from God that should be cherished forever!

Tuesday, August 7, 2012

Blueberry Muffins

Typically my second meal each day is a whole wheat bread.  I have found that eating a bowl of oatmeal for breakfast followed by a whole wheat muffin or slice of bread 2-3 hours later will help curve my appetite and sustain my energy level during the day.  I like to bake muffins or a loaf of bread over the weekend to eat throughout the week.  I have several recipes that I enjoy, but this blueberry muffin recipe is one of my favorites. 
Ingredients:
1 ¾ cups of whole wheat pastry flour
¼ cup of ground flaxseed
½ cup sucanat
1 tsp ground cinnamon
¼ tsp ground nutmeg
½ tsp sea salt
2 tsp baking powder
½ tsp baking soda
2 cups of fresh blueberries washed and dried thoroughly
½ cup of chopped pecans
1 large egg
1 cup low-fat buttermilk
3 tbsp virgin coconut oil

Directions:
Preheat oven to 375°
In a large bowl mix the flour, sucanat, cinnamon, nutmeg, salt, baking powder, and baking soda
Gently fold blueberries and pecans into the dry mixture
Bring buttermilk to room temperature in a medium bowl
Whisk egg and coconut oil into the buttermilk
Gently fold the wet mixture into the dry ingredients being careful not to over work the batter
Fill each muffin cup with ¾ cup of batter
Bake for 16-18 minutes or until lightly browned and a toothpick, inserted in the center, comes out clean
Remove from oven and let cool before gently removing muffins from tin

Wednesday, August 1, 2012

The Best Day Ever!


OU Cheerleaders & Diego
 
Our dear friends, Cliff and Debbie, wanted to do something special for Diego before his upcoming surgery date.  Little did they realize that Diego would proclaim this day as the best day of his life!  Cliff and Debbie are devout OU Sooner fans.  So, they invited Diego to the Sooner Caravan on Wednesday, August 1, 2012 in Oklahoma City. 
Diego was thrilled to meet the following OU coaches:  Bob Stoops, Sherri Coale, and Lon Kruger.  He received an autograph photo from each coach and had Bob Stoops autograph his brand new OU football.  He even had his picture taken with the OU horses, Boomer and Sooner!
In addition, he took pictures with some of the OU cheerleaders and pom squad.  Diego was especially fond of the cheerleader on the right in the above picture, Morgan Pistole.  Diego called me from the event to tell me that he met the cheerleaders.  He said, “Mom, they knew about my surgery!”  Morgan explained to Diego that she recently had to have surgery.  She told him not to worry because he was going to be just fine. 
Diego arrived home late Wednesday evening full of energy and talking non-stop about his fun filled day.  His eyes were glowing as he showed us his autographed photos, football, and even some balloons he brought home.  He slowly started to unwind as he retold the events of the evening.  As Diego was saying his prayers and drifting off to sleep he sighed, “I wonder when I will ever have a day better than this.”  Sweet dreams son and thank you Debbie and Cliff for giving Diego the best day ever!