Wednesday, August 3, 2011
I was not "prepared" for this!
As most of you know, Troy was diagnosed with Down syndrome when I was in my first trimester, so we had plenty of time to "prepare." However, I was not "prepared" for this! Sure, I knew what Down syndrome was, kind of. Once I researched it, I became overwhelmed, as I'm sure most people do. The material I was reading was just a generalization. No one really knows what any one is capable of doing or becoming. That was my mind set throughout my pregnancy, after my "mourning period," which lasted a few days. I gave my worries to the Lord & asked Him for guidance, for knowledge, patience, & understanding. Once my Troy was diagnosed with complete av canal defect just weeks after we received the DS diagnosis, I was concerned, but I knew that my God was not going to give me this sweet boy after a decade of trying to conceive just to take him away. I put all of my trust in God & knew that he'd give me the perfect child for me, Mack, & Chancey. Once I looked at Troy, I could see that he was just that, perfect, impeccable, no one could compare. God brought us through one hurdle, he was born breathing & he was able to breath without any support. Then God guided the surgeon's hand throughout his first open heart surgery & wrapped his loving arms around Troy, me, Mack, & Chancey during that stressful time. The surgery went so much better than expected! He was able to come home just 9 days after his OHS. Troy became fussy & started vomiting one day, almost 2 months to the day after his OHS. I just thought he was teething until he kept waking up after he went to bed...he would scream like he was in pain. Then the vomiting got worse so we called his doctors. Mack called the cardiologist, I called the pediatrician. The cardiologist advised us to give him a bolus of Lasix (which means an extra dose) & if he's not better in the morning to call & come in. But the pediatrician advised me to call 911. We figured the cardiologist knew best, so I gave him the Lasix. Moments later, he was vomiting it up. His breathing looked labored, so we rushed him to Egleston. We got to the ER at 1 a.m., Troy crashed & they called code blue at around 6 a.m. Troy had to be put on life support. Later that day, life support wasn't keeping him oxygenated, so they put him on an oscillator. Finally, he was stable enough for emergency OHS...but it was too late in the day, so he was scheduled for 1st thing the next morning. We were told that he had a severe tear in his mitral valve. We once again handed our baby over to the surgeon to fix our son. I prayed continuously the entire time. The surgeon came up to us after the surgery. Once I saw him, my heart sank. I looked at my husband & said "this isn't good." Sure enough, it wasn't. The surgeon told us that Troy had infective endocarditis so bad that his mitral & tricuspid valves were just rotten. He said that he tried to repair them the best he could, but there wasn't enough tissue, since he had to salvage tissue during his last surgery to separate the valves (they were fused together at birth). He told us that he didn't expect Troy to ever wake up. I was completely crushed. I ran out of the waiting room into a private room down the hall. I begged God to heal my son & prove that surgeon wrong. Hours later, we were told that our son could possibly have MRSA, so we had to take contact precautions in order to contain the infection. All of the cultures came back negative, but we still had to use the precautions. Troy was fighting & God was showing off! He fought to come back to us & he did! He was taken off the ventilator & was breathing on his own. He was given a PICC line & was getting 3 different antibiotics around the clock to get rid of the infection. He came home 9 days later with the PICC line in his arm to receive the anitbiotics for 6 more weeks. He went in for a follow up echo & the cardiologist was floored....Troy's heart was regenerating tissue & the holes were closing up! Months later, all of the holes where the tissue was rotten, were sealed up! Once again, God was fast at work! Troy was thriving, hitting milestones. We couldn't be more happy. His first tooth came in, his birthday came & went. He started crawling, talking, all the things he should be doing. Then his heart got worse. He went into heart failure again in December & had to have an emergency valvuloplasty of his tricuspid valve. Again, we prayed for God to intervene, but he was already ahead of us. They went in & were able to open up the valve so the blood could flow through. The surgery was a success, but he has a condition known as tricuspid stenosis. He has it because his heart healed itself & the scar tissue makes the valve narrow. It's something that he could grow out of, but it's not likely...of course, he wasn't supposed to live after his 2nd OHS! Just a few months later, he had another echo to see if the stenosis was worse, which we were told it was. His case went before the surgeons to decide if he would have another valvuloplasty or if it was time to do the valve replacement. We prayed without ceasing. We took him to the pastor at church & had him anointed. Just 2 days later, we were told that his pressure in his tricuspid valve was the same as it was after the valvuloplasty! God had worked another miracle on my son. We've been told that he'll need his tricuspid valve replaced one day, but the Great Physician hasn't chimed in on that just yet. We just take it one day at a time & pray for God's will to be done. I have read the statistics that are printed in books & on the websites & I hear what the doctors "predict." But then I see what Troy is capable of & how he's proving them all wrong. The "experts" say that a child with DS will walk around the age of 5...Troy was walking by 26 months. They also refer to people with DS as being "mentally retarded." Sure, he does things a little slower than kids without challenges, but look at all he's endured! He can talk...he can say over 50 words. He can tell you where every, & I mean EVERY body part is. If you ask him what sound just about any animal makes, he can tell you. We're working on the ABCs, colors, & shapes. He's learning to sing, too. He does do some sign language for the words he can't say just yet, like I love you, thank you, etc. But he can follow commands & he communicates wonderfully! Every where we go, he ALWAYS makes someone smile, which warms my soul. The joy & love he spreads is so infectious & we see him touch the lives of our family, friends, & complete strangers on a daily basis. None of the "experts" explain the unimaginable love & pride we'd experience, nor did they explain the pure blessings he'd bring to us. They tend to focus on all of the POSSIBLE negativity that they fail to prepare us for all of the POSITIVE things we'd experience. See, God made my little boy a little different for a reason. He made him to help us be closer to Him & each other. We don't want pity that our son has DS, we don't see him or his extra chromosome as a curse or a burden. So when I say that I was not prepared for this, I'm not focusing on his so called delays or his health struggles, I'm meaning the terrific side of it all....how he's working so hard to prove those so called experts wrong. Go on, T-Boy, SHOW OFF! Show the world that your something extra makes you who you are & that's AMAZINGLY AWESOME! We say that