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