Sunday, February 15, 2015

Day 15 - Patrick Root

There are so many things I could say about Patrick and his adoption.  I could write about the tug I felt on my heart when I first saw his picture, but then I would have to write about how I tried to ignore him even as his image permeated my every waking moment.  I could write about the spiritual freedom I felt when my husband, Ben, and I sat across the table from one another and determined that since we couldn't turn away from that beautiful boy we would abandon everything the world found sane and pursue Patrick's adoption with total dependence upon The Lord to provide everything we needed.  But, I would then be compelled to tell you about the utter terror I felt when I committed to financing Patrick's adoption after having just completed our daughter, Moxie's, adoption two months prior.  I could boast about my bravery as I set out alone to bring Patrick home from China.  However, the entire story would not be told if I didn't admit to a phobic fear of flying.  All of that may be interesting.  It may even be amusing.  But it wouldn't be important.  I'm a "Heart Mama".  We like to cut through the fluff and get to the important stuff because as one of my heart mama heroes says, "Today is what you have.  Don't waste it."  So, here is the important stuff about my baby boy.

Patrick was abandoned when he was between nine and fourteen months old.  I lean toward nine months based upon photographs from his first days in the orphanage, talks with his ayis (nannies) and the dentist's and pediatrician's observations. 

For reasons unknown, Patrick was diagnosed with a complex heart condition and left untreated in one of the wealthiest cities in China.  I don't understand.  I don't need to.  His file was reviewed and rejected by several families prior to our filing the Letter of Intent to bring him home.  Patrick was seven years and 10 months old when he became ours.  China had deemed him terminally ill.

Our pediatric cardiologist could only guess at the accuracy of tests done when Patrick was a baby.  We obtained a medical expedite and prayed that what the cardiologist described as a "best case scenario" would be a reality for our son.

Patrick's adoption began with the filing of our Letter of Intent to Adopt on the Monday after Thanksgiving, 2012.  I met him face to face on June 17, 2013.  It was a flurry of activity for us.  Patrick was blindsided.  Although we had sent pictures and gifts, cakes and candies, our son had no idea he was being adopted.  On June 17, 2013, I held an incredibly cyanotic, malnourished, dehydrated and terrified little boy who vehemently declared his dislike for "Foreigner Mama" and attempted to run into traffic as soon as we set foot outside.  He liked everyone but me.  We bonded over Coke Zero and room service.  When he told the nanny who asked him whether he'd like "stay with her" during our good-bye visit to his orphanage, "No.  I go America with Mama", I witnessed true, unadulterated faith.  Patrick followed me into the unknown because he believed the love I had for him surpassed anything he had known before. He wanted that love regardless of the cost.

We landed in Oklahoma City on a Friday and Patrick saw the cardiologist on Monday.  He screamed through the echocardiogram and the EKG.  He weighed 42 pounds and clung to me like an infant.  He believed I would leave him.  As we sat in the exam room waiting for the cardiologist my mind was blank.  I didn't know what to expect or if I should expect anything at all.  Every time I tried to form a cogent just trickled away.  The cardiologist came in with two residents and the PA.  My eyes filled with tears when Dr. Salkini took my hand and said, "Everything I wanted for Patrick is here.  WE HAVE HOPE."

Patrick's official diagnosis that day was Double Outlet Right Ventricle with mitral atresia and moderate to severe pulmonary stenosis, Hypoplastic Left Heart, transposition of the greater veins and anomalous venous drain.  He had no pulmonary hypertension which would have made him inoperable.  It is likely that the severity of the pulmonary stenosis protected Patrick's lungs.  His lips were near black.  His best oxygen saturations were in the very low 70s.  His fingers and toes were dark and will remain clubbed for his lifetime.  The doctors later discovered that Patrick was born without a spleen, has a malrotation in his bowel, has a hernia and had a cleft-type gap in the muscles of his throat.  My son is fearfully and wonderfully made.

Patrick had his first, and to date only, heart catheterization in September of 2013.  Surgery was scheduled for October.  We went to the pre-op appointment and by the time we got home the surgeon called to cancel the surgery. A virus was discovered in Patrick's nasal swab.  Surgery, with a different surgeon was scheduled for late January, 2014.  

Patrick and his sister Maisy sang in their "Winter Program" on January 31, 2014.  That same day, the PA in the cardiology clinic told me, "We can't wait any longer because Patrick is at a risk for brain damage at this point."  Surgery was scheduled for February 3, 2014.

Patrick wore his Iron Man costume to the hospital for his heart surgery.  The surgeon assured me that he'd done "thousands" of Glenn surgeries and would be in and out in three or four hours.  Patrick's surgery took in excess of seven hours.  Ben and I and our friend Carol sat in the private waiting area and tried to talk.  At the five hour mark the phone rang.  The nurse told me that Patrick was losing a lot of blood.  They could not close his chest but would give him blood and see what happened.  At the six hour mark, the bleeding had not relented.  The nurse told me "it's running out like Kool-Aid".  Thirty minutes later, I heard myself ask the nurse if there was "anything else they could do".  Patrick was administered a clotting agent called Factor Seven.  His chest was left open.  When I walked into the ICU, I could see my tiny boy's heart beating through tape over his chest.

Patrick spent a week in the ICU.  A difficult time was had with pain management.  Patrick was on and then off and then back on the ventilator.  He was off and on Bi-pap.  He had an emergency MRI because the surgeon feared a bleed on his brain.  During one of the brief moments he had to speak, he whispered, "Mama, I need hold you."  I thank My Lord that when I am weak, He is strong because I have never been weaker than I was then.

We eventually moved out onto the floor where Patrick, hating his "new normal" regressed to behaviors I hadn't seen since our first days together in China.  He had night terrors.  He stopped talking.  He was so weak.  At his lightest, he weighed 38 pounds.  He was 8 years and 5 months old.  

One year ago today Patrick was still in the hospital.  He had been able to "take his first steps" to me.  I may not have been his mama for his first baby steps, but those first post-surgery steps were enough for me.  He filled out his first valentines while in the hospital and gave them to anyone who visited his room.  We remembered our HOPE.

Patrick was discharged from the hospital on February 16, 2014.  On February 19, 2014 we were readmitted through the emergency room.  Patrick had Chylothorax.  

On the morning of February 20, 2014, Patrick went in for emergency placement of drains in both of his lungs.  My son's lungs had filled with a fatty substance called Chyle.  Had his condition occurred in China, or been left untreated, it would have killed my little boy.  For days upon days the Chyle poured out of Patrick's lungs.  The doctor's put him on a no-fat diet for 3 months.  We left the hospital on March 8, 2014.

Patrick is a different little boy today.  For one thing, I'm no longer "Foreigner Mama" but instead, I am his "favorite" whom he pledges to "love forever".  Patrick rides a bike, plays football on the playground and reads and spells like a champ.  He weighs 53 pounds and is forty-two inches tall.  Next month we will go to Florida for his Make-A-Wish Trip.

I never imagined adopting an older child.  I never imagined adopting a boy.  I certainly never imagined adopting a child with a severe congenital heart defect.  But, I never imagined Patrick, either.  That is the important part---in this whole saga, only that.  I never imagined Patrick.  I didn't have to.  He has been my most unexpected miracle.  While I know that the Glenn and the Fontan, a surgery Patrick will have in a year or two, are palliative, I know, beyond a shadow of a doubt, that Patrick has HOPE.   I know, too, that Today is what we have and I would rather have Patrick Today than not have him at all.  There is a Chinese proverb that says, "To be loved completely gives one HOPE; to love completely gives one courage."

The important thing?  There are many children just like my Patrick waiting for their HOPE.  Won't you be courageous?


Andrea O. said...

He is such a beautiful child! I've enjoyed following his story! said...

Amy - you had me crying! I just love Patrick's story! I remember meeting that smiling, sweet, BLUE little boy in China - I love that I now get to see him post-surgery with a family!! Darren's bed buddy will always have a special place in my heart - those THREE MUSKETEERS are like no other!! I am going to write down that Chinese Proverb - "To be loved completely gives one HOPE; to love completely gives one courage." - as that comforts my heart during our journey with Bryan.

LisaE. said...

Amazing story Amy. Thank you for sharing. I too love that quote.

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