Although last night was an amazing night..... and I am on an amazing high from it..... I wake today in memory of an amazing human being. 15 years ago today, a piece of my heart was born. I miss him every day of my life!!! Happy Birthday to my sweet son. Heaven isnt where I want you but my heart is comforted to know that is the alternative. I wrote the story of my boy..... my stuggle and the joy I had to say he was mine. HAPPY BIRTHDAY ZACKREY LARZ!! IM STILL THE LUCKY ONE The doctor said “its a boy”!! WOW… my first son. I couldn’t have been a happier woman. The thoughts of being able to share my life with a son was almost overwhelming. I already had a daughter so having a boy was on my agenda for sometime. After a pretty easy pregnancy it was time. The doctor said its time to push! After a few minutes, out came this amazing human being! I couldn’t believe it. I fell in love instantly. He was 8lb 14oz and as healthy as could be. He screamed with power and I cried with joy!! Coming home and settling in was easy as it had not been my first time around with having a new baby. I breast fed every few hours and he slept like a champ. I walked with my head held high because I had all I ever wanted. My kids were happy and healthy. When my son was about 4 weeks old, I noticed he wasn’t really gaining any weight. I took him into the doctor who said it was probably my milk and that maybe I was not producing enough. I was fine with the thought of bottle feeding as its all about getting your babies what they need. I switched to formula and he started to gain weight pretty quickly. The doctor wanted us to come in and check his weight a week later. While there, the doctor said he could hear what sounded like a faint heart murmer. The doctor said its not abnormal for people to have but wanted to go get an echocardiogram to verify it was nothing. I left feeling confident as in my mind I thought…. Its normal. A few days later I was at the Childrens hospital for our appointment. I had no fear. I was just happy to get our little pic of his heart and move on with our day. They brought us into a room with machines and a table. Zackrey was alittle tired but was fine with the doctor touching him and taking his clothes off. They put some warm goop on his chest and started sliding a hand held thing over his chest. I saw what looked like a beating heart on the screen and was being the ridiculous mom that thought “how cute”. The doctor took a deep breathe and stopped the test. He looked at me with horrific eyes, said nothing and walked out of the room. I was clueless what that meant but within minutes 4 more doctors came in. NOW… I was scared. I asked them over and over, what was wrong. They just said we have to look, give us time. Here I was, holding my little guys head, kissing him and talking to him to keep him content as these doctors looked at the screen as if they had NEVER seen anything like it.! After what seemed like forever they all left and said they were going to look at his film in another room and be back. I picked up my guy and just hugged him. He was tired and needed to sleep so I just held him close until he fell asleep. (as I write this, I can still relive that moment as if he is laying on my chest).. The doctor who first saw us reappeared about an hour later. He had an awful look on his face. He said we have found something extremely wrong with your sons heart. He has Hypertrophic Cardiomyopathy. WHAT LANGUAGE WAS THAT!! I had never heard of that nor did I feel it was something I could even wrap my head around. They told me they would run tests to find out but basically Zackreys left septum of his heart was the size of a grown man. I couldn’t digest it. I couldn’t wrap my head around the fact that something could be wrong with my son. They told me that it was VERY serious and that they needed to figure out exactly what was causing it to start treating it as he couldn’t live with it like it was. Immediately I started seeking out the best genetic doctors I could find. I found one who is one of the best in her field and was lucky enough to not only be so close to her, but who wanted to see him so quickly. We were there with her within a week. I took the treck to Yale New Haven Hospital to see Dr. Seashore. She works at a teaching hospital which for us, we found out, was great for our situation. She suggested taking his muscle to get an exact diagnosis and we could do a treatment plan from there. We were in surgery within 3 days. Zackrey got VERY sick during surgery. They had a very hard time keeping his heart beating and his blood pressure normal but after time, they got the muscle they needed and he was in recovery. Within an hour after surgery, he was back to being extremely unstable and to the ICU we went. His oxygen levels were so low that they put a main line in to oxygenate his blood. His body was having a hard time processing the anesthesia and pain medications so they gave him an epidural which ultimately went into his blood and was paralyzing his system. After a short time, they worked that out and he seemed to be recovering. I felt that we had been through the worst of it. He was awake smiling at me, we had muscle to figure this all out so I thought treatment of whatever they found and we would be living our lives back to normal in no time…. I could not have been more wrong!! After a few weeks, ALL the tests came back negative. Basically they couldn’t find 1 thing that could be causing his heart to grow so quickly. He was home with us but was still so weak from surgery that they had to put a NGtube in place for us to feed him. It’s a tube that goes down his nose into his stomach so we can give him formula without him having to suck a bottle. We were at a stand still. The doctors said they had a little muscle left but that they just didn’t know what to do as they had tested everything they could think of and couldn’t get any answers. I thought, give him a new heart. Seemed like the best option as his heart muscles were still growing at a rate faster than him. The doctors refused to do it. They said without a diagnosis that a new heart could do the same thing as this one as they felt it was something mitochondrial causing it (in his cells). At this point Zackrey was about 5 months old. He was now on a Gtube which was directly surgically put into his stomach. He was so weak that he no longer really made noise. He always smiled, loved people, was always happy and would wave at everyone but just very tired. Having him in the hospital was only worse for him because they couldn’t do anything I wasn’t already doing except put him on machines to monitor him. I had taken him to a naturalist so we were giving him a bunch of natural things like fish oils and things that make your heart stronger as the traditional doctors were saying they couldn’t do anything because they couldn’t figure out what was wrong. Here I was, my happy dream of what I thought was the perfect family was being clouded by tubes and machines. HOW could this happen. All I wanted was to watch him grow, hear his little voice again. I got to a point were I was so scared to go to sleep that I just didn’t. He was not growing anymore. He was this 13lb ball of perfect to me!! I couldn’t help but eat up every moment of him. Here he was, happy, smiling and not giving any sign of complaint. How could I sit and feel sorry for myself when he was the one who was sick. I tried everyday to be as normal (or what we are told is normal) in our household. I would pack up to go grocery shopping with oxygen container, feeding machine, meds and baby under tow… I was NOT going to let this illness fade away a dream I had of having this perfect life. I may have had a different way of how I lived but it was our life… so it worked. November 2nd was no different then any day. I woke up and gave Zackrey his meds. What I noticed throughout the day was he kept turning a grey color… but then back to normal. I thought “ we need to head up to Yale and get him checked out”. When we got there, it was like hell broke loose. They grabbed him from me and told me his oxygen level kept dipping to toxic levels. As scared as I was, his little eyes kept looking for me for comfort. All I could do is hold him and smile at him as they attached him to machines and put in IVs. As long as he had eye contact with me, he seemed to take it all in stride. They rushed us to the ICU and started to run tests. When they came back it was MORE bad news. His heart had grown so much that it was starting to surpass his airway. WHAT!! How could I accept this… They said “Karyn, he is dying.” Everything in me screamed SAVE HIM!! Here I was with the BEST in their industry and they are looking at me saying… you need to take some time and say goodbye to your son. I just couldn’t accept this. I NEEDED to find someone to fix this!! As a Christian woman I had prayed for months to help save him, now I prayed to have peace and the wisdom to do what is right. Within 24 hours every doctor from every different ward had visited me. They all said the same…. “There is nothing we could do”. A cardiac doctor came down and sat with me. He said that the only way I could keep my son alive is to put him on a respirator. For me, I thought at first… OK. Until we can figure this out this is a good solution. So I asked him how long would he be on this and what tests would we do to figure out what was wrong. He looked at me with such sadness. He said “this is not long term. We will put him to sleep and put a tube down his throat to breathe for him. He will remain asleep and we may have him like that for a time but ultimately he would die on the machine because his heart will grow beyond his airway. Its just for you to have a longer time with him”. I couldn’t breathe!!! I ran down the hall and hid in some hallway!! My husband came to find me. We sat and cried. I couldn’t accept this! I tried for months to get him to live, now they are being creative on how to help him die. I needed to be next to Zachrey. He hated being in the hospital. I went to his bed side. I looked at him and thought…. This is his life. NOT MINE!! How can I put him to sleep just for me to hold him longer. How could I be so selfish. He was in no pain they told me. I looked down at him and said outloud, you want to get out of here? Its like a light was shined down on his face!! He looked at me and smiled. I yelled for the nurse. I wanted these IVs taken out now!! She was calling everyone! I was yelling take them out!! Im taking him home.! Within 10 minutes, I had him wrapped up and we walked out of the hospital. I remember a nurse following me out of the hospital. She was saying, how could I not put him on a resperator? She said I could have him for up to a year. I just STOPPED AND TURNED to this woman. I said, “I hope you never have to make these decisions for one of your children, but if you do, I pray you NEVER have to deal with someone like you”. I walked to my vehicle, put my sweet son in and drove home. For the next few weeks, I didn’t live saying goodbye to my son. I lived his life like everyday was our last. I took him to the ocean to taste the water. I took him to the mountains to roll in the leaves. I brought him to the beach to bury him up to his neck in sand. WE LIVED…. No more sick, no more meds, just lived!! I had a plan… if he looks very sick, I will go sit under the tree in the yard and let God take him with his family loving him. No tubes, no yelling, just peace. November 20th was what we know now is the last day I would get to spend with my amazing boy!! WE woke up and did our usual morning feeding through the tube. He wanted to sleep a lot so I took this time to leave and run an arrand. Within a few minutes after leaving my mom, who was at my house when I left, called and said there is something wrong with my Zackrey!!! I don’t remember the drive back but I remember driving up the front lawn and almost hitting my front door. I ran inside. He was grey and not responsive. He was breathing but very shallow. My husband and my mom stood by as we thought, this is it. What could I do!!! I felt we had a plan. Every part of me wanted to call 911! Get someone here to fix this!!! BUT…. There was no one who could! No EMT, no doctor, no medicine, no tubes. I fell into my plan. I grabbed him and brought him under the tree. I felt so scared and so angry!! I remember my neighbor was watering her flowers and I was so mad at her. My son was dying and she was watering her flowers!! I looked up at the sky… I yelled up to God and said you didn’t let me say goodbye!!! Please God, Ive asked for nothing… LET ME SAY GOODBYE TO MY SON!! Within moments, Zackreys breath got smoother, he seemed to open his eyes and get very comfortable. I looked at my husband and said, hes not ready, IM not ready!! I took him into the house. I asked my mom to call everyone close to me. My siblings and my friends. I wanted everyone to share my sons life with us. Deep down I think if they were there, nothing could happen. At this point, Zack was wide awake. He was waving at my mom and dad. He was sucking his thumb and smiling at everyone. Time seemed to stop but before I knew it, I had 15 people in my house. He was passed from person to person. He seemed to LOVE everyone gloating over him. I felt it was time to change him. I needed to touch him. As my mom handed him to me… he got that look on his face again. It was like a light was dimming. He started to fall asleep, he started to turn that color. My inner self started to panic. I looked at my husband and he said, lets just lay down on the couch with him. As we laid there, I was looking around. The fear of death seemed to leave. I was watching as people were in conversations at the table in the kitchen, eating the food people brought and laughing over times they were sharing. Here Zack was dying and it seemed that everyone was accepting it. I felt so at peace that ALL these people loved him!! My Aunt is a nurse and so my mom asked me if it was OK if she come over and look at Zackrey. I said Yes. Within minutes, She was next to me. She listened to his heart and looked in his eyes. He was only taking a few breaths a minute. She told me he wasn’t with us like he was. That his brain was no longer working because his pupils were no longer reactive. I understood what she was saying but I couldn’t comprehend that this was the end. I felt so paniced. BUT… then I looked down at him. His eyes opened and he looked at me. I WAS SHOCKED!! My aunt was shocked. He squeezed my finger as if to say “its ok mom”. My aunt said sometimes people need permission to leave. I looked out my window at the sky that just earlier I was yelling to keep him with me…. I looked out again and said “its time God, take him home”. I looked down at my sweet boy, my dreams and my life and watched as he took his last breathe. I stood up and went under the tree in my yard. It was raining. I let the rain hit his face, I let the rain hit my face. I kissed him on his lips and I said goodbye to my sweet baby boy. Zackrey Larz Wesch changed my life forever. His courage in his pain, his smiles during his illness and his ability to lighten up a room with no words has given me the ability to get out of bed everyday and do my solid best I can at what life puts in front of me. I miss him everyday of my life!! I can honestly say I was blessed for all I got in him. I am blessed for every bit of his life and even in his death, I still feel that he was given to me exactly like he was and I am thankful for the opportunity to have been able to have him as my son! 1 year after Zackrey died, the genetic Doctor called me and said that there was alittle bit of his muscle left and that it was getting to a point they would no longer be able to store it because it only stays good for so long. She asked if she could send it to a lab that was finally being funded to be able to do testing in 4 of the most rare protein disorders that there are. Of course I said yes. Within 3 months, we were called by the Genetisis. The results showed that 100% Zackrey had a disease called C.O.X. deficiency. He was deficient in the C.O.X. protein in every one of his cells. He was 1 of 10 children in the United States to ever be diagnosed. Knowing this would not have changed Zackreys outcome. They do now however study myself and my husband whenever a lab gets funded to study this disease.
Posted on: Sun, 06 Apr 2014 13:57:43 +0000
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