This blog was inspired by 31 for 21 & is about my wonderful family.

"As a mother, my job is to take care of what is possible & trust God with the impossible." ~Ruth Bell Graham

"Never look down on someone, unless you're helping them up!"

Wednesday, April 27, 2011

Troy's journey..

     This entry is about Troy's heart journey thus far....it's a tad lengthy, but it's worth the read!  I'm posting it for those who do not know about his journey & to help encourage others.
     When the perninatalogist performed the ultrasound of Troy's heart to scan for heart defects, I was nervous.  A heart condition was serious, so I was prepared for anything.  Or so I thought.  I knew something was wrong when the nurse lingered over his tiny little heart.  I wasn't trained on how to read an ultrasound of the heart so I was in the dark for the first time.  Then she called the doctor in without telling us that everything was good, so I was really concerned.  I looked at my husband & told him that something was wrong.  He asked me what I saw, I told him that I couldn't tell, don't know anything about the heart.  Of all my medical training, background, & experience why in the world did it have to be something that I was clueless about?  Then the doctor did his own scan & he took an eternity studying Troy's little heart, too.  Then he told us that Troy has a heart defect that is common in kids with Down syndrome, complete AV canal defect.  Uh, what?  What in the world is that & how do we fix it?  First off, a CAVC (complete atrioventricular canal) is a large hole in center of the heart affecting all four chambers where they would normally be divided. When a heart is properly divided, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood from the body. A CAVC allows blood to mix and the chambers and valves to not properly route the blood to each station of circulation.  To fix it, he would need surgery...open heart surgery.  So, we were referred to a pediatric cardiologist who would follow Troy for his entire childhood & would refer him to the surgeon that would repair his heart.  She explained that this is the most common defect in children with Down syndrome & that they (& the surgeons) see this all of the time.  She said that he'd need open heart surgery around 6 months of age.  They wanted him to grow some, so he'd have a better chance of survival & his heart could grow.  She said that his tricuspid & mitral valves were fused together, so they'd have to make the one valve in to two separate valves, like they should be.  That eased my mind some, but when you're dealing with the heart, you can't help but worry.  As my due date drew near, Troy's cardiologist told me that he might not have enough blood flow to his lungs, so he may not cry.  He may have to have surgery immediately after birth.  Huh?  You tell me this, NOW?  I thought all was well, now you're saying that it might not be?!  I had to go in every other day to my OB/GYN for a non stress test to see if Troy was tolerating his environment.  Finally, Dr. Lake (LOVE him) said that he thinks I should be induced, so we scheduled my induction.  I couldn't wait to finally see & hold Troy, but I was so nervous about 'the something' that could go wrong...I just longed to hear him cry.  Because if he can cry, he can breathe & he won't require surgery yet.  Then the moment was here, he was born....he cried as soon as his little head popped out!  I began crying myself, tears of utter joy!  We all had a few minutes to see him before they whisked him to the NICU.  They did all of the tests, scans, etc. & he was great.  We could hold off until he was about 6 months old before he would need open heart surgery to repair the defect.  He was oxygenating well, his sats were continuously 93%, but we kept a close eye on him.
     Then he went into heart failure at 2 weeks old, but we were prepared for this.  The cardiologist put him on some medications to keep him alive & told me to increase his caloric intake.  He was slow to gain weight & I fed him every 2-3 hours around the clock.  The cardiologist decided that he needed to go ahead & have his surgery a month earlier than we expected.  His surgery was set for June 11th.  But at the last minute, he had to be pushed back due to an emergency case...so he was set for June 12, 2009, just one day shy of turning 5 months old.  The surgeon advised us that he had 3 holes in his heart.  He was missing the entire center of his heart & he had 2 smaller holes, one just above the big hole & one just below.  He said that the valves were the concern.  When you reconstruct the valves, they have a tendency to leak.  If they leak too much, he'd have to have another surgery down the road, but right now that leak was minimal.  He said that the surgery went well.  I was so proud of my handsome little warrior!  He had some set backs the next day, though.  His right lung collapsed, then the top of his left lobe collapsed, too.  He had to go on a feeding tube for the first time.  This meant more time in the CICU, but that was the least of my worries.  He had to have respiratory therapy several times a day & was on a cpap canula to keep his O2 sats up.  We spent a total of 9 days there.  He went home on a lot of new medications, but was weaned off them eventually.  At the time, I figured that June 12, 2009 would be the hardest day of my life.  I was wrong.
     Not even 2 months later, we found ourselves back at CHOA @ Egleston.  Something was wrong with Troy.  We arrived at Egleston, in fact I laid him on the trauma bed in the ER at 1:00 a.m. on 8/12/09.  His O2 sats were in the low 80s.  The cardiologist that was there did an echo cardiogram & said that he had a severe leak in his mitral valve.  He admitted him & said that he & Troy's surgeon would compare that echo to his previous ones & make a decision on what to do.  We got up to the room & hoped that Troy could get some rest...it was around 5:00 a.m.  Troy wouldn't stop crying & he wouldn't be still.  I asked the nurse to come look at Troy because he wasn't acting himself.  He usually lets me or his daddy rock him to sleep & he wouldn't.  He's usually a happy baby, the best baby.  So she gave him some medication to help him sleep.  But a few minutes later his spit up blood.  I pressed the nurse button, the tech came in, got the blanket with the blood on it, & put in in the soiled linen bin, then walked out.  I pressed the button again & asked for the nurse.  She came in & I told her what happened.  She said, "well, the medication I gave him is orange.  Maybe that's what he spit up."  I told her that it was blood.  She said she'd get the doctor.  He FINALLY came in & agreed that he was agitated.  He ordered a blood gas & asked me to lay Troy on the bed.  As soon as I laid him down, his O2 sats went from 73 to 50 to 37 to 0.  I looked at my husband, he looked as white as a ghost.  Then something happened that will convince the most devout atheist that there is a God.  His surgeon walked past Troy's door as they called the code.  He rushed in & took over.  They surrounded his bed & rushed him to the CICU.  All I knew was that my son was not breathing when he left that room.  I didn't know if they had revived him or if he had passed away.  I was numb.  We were told to wait right there & someone would update us as soon as they knew anything.  Mack & I sat there, speechless.  What do you say?  You don't say anything to anyone, because this was not something that I could fix, Mack could fix, or even those surgeons, doctors, or nurses could fix...this was in God's hands.  I began to pray.  "Dear Heavenly Father, thank You for this day.  Thank You for all of the blessings in my life.  Thank you for Troy & for the ability to know to bring him to this hospital & getting us here safe & sound.  Lord, I ask you to take over, use those doctors hands to save my son.  Help them to know how to heal his little heart & body.  He's a fighter & he will get through this if You give him the chance.  Please be with all of the children here & their families.  All this I ask in Jesus' name.  Amen."  The next few minutes seemed like an eternity.  I just had a feeling of numbness, disbelief at the entire situation.  I called my parents to tell them not to send Chancey (our oldest son) to school & to get down there ASAP.   Then a wonderful nurse came in the room.  She said that he had to be put on life support.  That his surgeon will perform emergency heart surgery as soon as he's stable enough...that could be in an hour or in a few days.  We weren't prepared for this.  Our oldest son was at his grandparents' house & it was his first week at school.  We didn't have any clothes or necessities, Mack was supposed to be at work.  Our dog was at home, alone.  But I couldn't focus on any of that.  All I could do was pray continuously.
     We couldn't see Troy until rounds were over at 10 a.m.  And in the mean time, we had so much to do.  We went over to the Ronald McDonald House to get a room for who knows how long...thank God for the RMH.  They would put us up, feed us, help us in any way, all just a mile away from our sweet baby.  We needed to get some clothes & necessities, but our house was 60+ miles away & I wasn't leaving that vicinity, PERIOD.  We handled everything at the RMH & headed back to the hospital to see Troy.
     Then Troy took a turn for the worse.  He was not oxygenating on the ventilator.  So they put him on an oscillator.  Instead of breathing for him, it inflated his lungs & vibrated the air around.  He couldn't have the life saving surgery until he was stable.  This did the trick & he was scheduled for emergency surgery the first thing the next morning.  My poor boy would have to hold on until the next morning...I begged him to hold on, just fight until he could get some help from the surgeon.  We had to leave the hospital.  See, at CHOA, you aren't allowed to stay with your child 24/7, at least not in the CICU.  You have to leave at night, you have to leave at 6 a.m. & can't return until 10 a.m., or when ever rounds are finally over, & again around 5:30 p.m. & you can't return until 8 p.m., & if there's an emergency or a new patient coming in, you have to leave.  So I told the nurse to call us if there was ANY change.
     The next morning, we were allowed in the CICU early because of Troy's early surgery, which was scheduled for 7 a.m.  We got there around 6 a.m. & prayed for him.  We watched as they prepared everything for his surgery, holding his hands, rubbing his little body, kissing his swollen face.  We were allowed to walk down the hall with Troy until we reached the OR doors.  I walked & watched the nurse as she squeezed the apparatus that was manually breathing for him.  I think I cried the entire walk.  We kissed our boy & put him in the hands of the surgeon once more.
     This time a calm didn't come across me.  I was on edge the entire time.  It felt like I had swallowed an elephant.  Finally, the surgery was over.  We waited to hear from Dr. Kogon's assistant, just like the last surgery.  But this time, the surgeon came into the waiting room.  My heart fell to the floor.  I looked at my husband & told him, "some thing's wrong."  Sure enough, I was right.  He told us that Troy had an infection that's known as infective endocarditis.  He went in to repair the mitral valve & it just fell apart.  The same thing happened when he went to check his tricuspid valve.  I'll never forget his words, "there wasn't enough tissue to reconstruct the valves,  I pieced them together as best I could.  But it doesn't look good.  Not good at all.  I don't expect him to survive."  I couldn't breathe.  I had to get out of that crowded, impersonal room.  My son had infective endocarditis?  How in the world did he get it?  How could he have that bad of an infection without a fever or any symptoms other than fussiness & vomiting?  How could I miss this?  What was I going to do without my son?  I began to pray & beg God.
     As I walked out of the room that I ran in to, guess who was getting off the elevator?  My pastor & our associate pastor!  Talk about God intervening!!  They prayed with us right there in the hall!  I could feel that God was listening to us.  Then a calm came over me, as if God was holding me in His mighty arms, whispering, "I am here.  Your son is going to be just fine."
     Then we were able to go see Troy.  He looked remarkably well to me.  Glory be to God, our boy was fighting.  He was beating the odds.  They did blood cultures, put in a PICC line, put him in isolation, & he was taking 3 of the strongest IV antibiotics around the clock.  The doctors suspected that he had MRSA, but the cultures came back negative.  We were on contact precaution anyway for a while...had to suit up head to toe before entering his isolation room.  
     Troy began responding to the antibiotics, although we didn't know what the infection was or what caused it.  That really didn't matter to me...I just wanted my son to fight, to survive.  And he was doing just that!
     Not only did he survive, but all of the holes in his valves closed up on their own.  His damaged heart was healing itself!  How, you ask?  God, that's how!  I bet you have chill bumps, don't you?!  God, our Father, was laying His hands on my son, healing his unhealable heart!
     Just months later, he was taken off all of his heart medication for the first time since he was 2 weeks old.  But we still didn't know how he contracted the infectious endocarditis.  We were told that he had MRSA, but the cultures were all negative.  Even the CDC couldn't find the culprit.  We were just told that he most likely contracted it when he had his first surgery.  So now they labelled it as culture negative endocarditis.
     Then mid December 2010, we found out that due to the scar tissue in his heart, he has tricuspid stenosis.  Which means that his tricuspid valve is more narrow than it should be.  He went into complete heart failure on December 16, 2010 & was rushed to CHOA @ Egleston.  We were told to be prepared to be there until after Christmas.  But his doctors performed surgery the next day.  He had what's known as valvuloplasty of this tricuspid valve.  They went in & put a balloon in the valve to try to open it up.  If it wasn't successful, he'd need to have an artificial valve to replace the tricuspid valve soon.  Dr. Kim came in & told us that the pressures in his valve went down remarkably after the surgery!  We'd have to keep an eye on it & him.  If he started having the same symptoms that we'd have to take another look, but that the surgery was a complete success.  So far, the valvuloplasty has kept Troy's heart stable.  I have to keep a close eye on Troy & if he begins to show signs of heart failure, I am to notify his cardiologist or take him to the ER at CHOA @ Egleston.  I've asked his cardiologist if it's possible that Troy would not require the valve replacement & he said, "it's possible, but not probable.  I've learned to never give any promises or say something is impossible."  At least we still have some hope.  We want the absolute best for Troy, so what ever he needs, we will provide.  But a valve replacement means that the artificial valve will have to be replaced every 2 years until he stops growing & then every 10 years after he reaches adulthood.  That's a lot of surgeries on his little heart.  However, it is possible that as Troy grows, & his heart grows, that his valve will even itself out.  So, please remember my Troy when you pray.  God has got him this far, I know He will come through for Troy again.
     July 11, 2012, Troy went for his routine check up.  I was nervous, as I usually am before these appointments.  The doctor ran all of the routine tests, listened to Troy's heart, checked his liver (because of the stenosis in his tricuspid valve, fluid backs up & makes his liver swell,  causing CHF...that's why he's on Lasix), & checked his growth.  Dr. Johnson said, with the BIGGEST smile on his face, "Troy is doing remarkable!  His valve is growing with him.  The murmur is the same, his heart has been unchanged in over a year & a half, so I think that the valve won't have to be replaced for another 5-10 years."   Tears welled up in my eyes!  Five to ten years...WOW!  We were expecting to have it replaced anytime now, & he's saying that we have 5-10 years!  I began to thank God immediately.  I mean, honestly, how else could this miracle be possible?  He told Troy to keep up the good work.  He wasn't concerned one bit with his growth, said he looked wonderful!  We aren't to go back for 6 months (which is fabulous because we are used to going every 3 months),
     Troy went for his semi-annual follow up with his Cardiologist on Friday, January 25, 2013.  Now, Troy wasn't happy during the BP check, the EKG, or the Echo cardiogram, but this mama left happier than ever!  Troy's heart sounded fine.  He's growing well, which means his heart is growing, too.  Pressure gradient is the same as it has been since his valvuloplasty!  His doctor said that he was too well to be sitting in his office!  Hallelujah!  Follow up in July.
     Troy's follow up appointments in July of 2013, in January 2014, & July 2014 were all the same. His heart is unchanged & the pressure gradient remains the same! No changes means no surgery!  His heart was doing so well that Troy was able to stretch out his cardiology visits to annually!  His visit in January 2015 revealed that his heart was growing, pressure gradient was good, liver looked well.  Continue Lasix once a day.  Next stop, January 2016.
Troy's annual cardiology appointment left Mack & me in tears.  We fought them back as we headed to the elevator.  Troy's heart looked so well that he is off his medication!  His valves are growing along with heart & the pressures are the best they have been!  If my son doesn't make you believe in God & in miracles, I don't know what will!
    So if you have prayed for my Troy, I can't thank you enough!  God is answering them.  He has a plan to use my son to spread His glory in this world.  Please continue to pray for him & our family. ♥

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