Sunday, March 1, 2009

Dylon's Story

Dylon's CHD journey began in the summer of 2009, he had been a really healthy baby up until that point in life. He has an identical twin brother and granted they were premies, they were both healthy. Summer 2009 Dylon came down with a stomach bug and was hospitalized for dehydration. At that time, my husband and I were in another hospital with Dylon's twin brother Houston. Houston had gotten the virus too and he was life flighted to a bigger hospital because his body was trying to shut down. Our family was taking turns taking care of Dylon at our local Regional hospital when our family doctor heard a murmur. Our cousin (Mandi) who was taking care Dylon, told us about the doctor hearing the murmur, but we assured her that it was probably nothing. We had been told he had a murmur a year before that when he had gotten sick but when we went back for a check up they had said the murmur was gone. So honestly that is what we had expected to happen again. We made the appointment and went to see a pediatric cardiologist in Pensecola,FL. They did an EKG and then they wanted to do an echo which by the way they said, "it will take about 3o minutes for the echo." Dylon laid calmly for 3o minutes then one hour then two hours. The echo tech, was struggling to find whatever was "missing". She had the pediatric cardiologist come in and she too seemed baffled. I then began to worry, what if there really is something wrong with my babies heart? Finally they told me that they couldn't see part of his aorta, and there needed to be more test done to decide the next step for Dylon. Again we scheduled for a sedated MRI, which was a horrible experience for us at this particular hospital. We would then come back in a week to discuss the MRI. When we came back to review the MRI, we where told that this hospital couldn't do anything else for us that we should go somewhere else. They recommended Atlanta Sibley Heart Center and I agreed to go there and that they wanted to do a heart cath there. It would be months before we were scheduled to go there, so I started researching and researching.I knew nothing about heart defects, I still didn't know Dylon's exact condition but I learned just how common they are. I have an aunt that lived in San Antonio and worked for a dentist office. She had asked that dentist who he would send his kids to had they been diagnosed with a heart defect and he said "Texas Childrens Hospital with Dr.Fraser as a surgeon". Again I researched Dr.Fraser and was blown away by his credentials and I was taken back by the hospital. I called TCH and talked to Dr.Fraser's nurse and asked if I could send Dylon's MRI to them and get a second opinion by Dr.Fraser. It wasn't a few days and Dr.Fraser (the Awesome surgeon) called me to discuss Dylon's MRI. I could not believe he took the time to call me. We talked for a bit and come to find out the dentist that my Aunt worked for, his dad actually taught Dr.Fraser at The University of Texas. Small world right? Upon that conversation we decided to go out to Houston,TX to talk with the cardiologist and meet with our surgeon. We were out there about a week, Dylon had a week of test being run, some of the same ones that were ran in Florida were repeated. After TCH had read Dylon's MRI's and Echo's, they said that they didn't see the need for surgery right now, but come back in 6 months for a reevaluation.His condition is known as cicumflex aorta with a vascular ring and unattatched left subclavian artery. We were relieved, WOW, maybe no surgery after all. Six months flew by and we drove back out to TCH and did another MRI, just to see how things were looking. I can remember it like yesterday, sitting in the Cardiologist office and he started to draw a picture of what Dylon has and explained that surgery would be needed. My life stopped, I wanted to cry, scream, pray, smile but because Dylon was sitting in my lap and I didn't want to upset him, I just stared at my husband and tried to take in the rest of what our cardiologist was telling us. We scheduled the surgery for the end of June 09, but Dylon started having complications and his surgery was moved up to June 4, 2009. His surgery tooked almost 10 hours to complete and I promise it was the longest 10 hours of our lives. Before surgery you are in a "waiting" area where all the other patients are waiting as well. Dylon knew what was going on and insisted on calling his brother before he went back. So of course we called his brother and once they got done with their conversation, he said "i'm ready now". I will never understand the strength of a three year old. When he had gotten off the phone, Dr.Fraser had come up to us and was discussing the surgery with us again and was ready to take Dylon back when The door opened up and it was our preacher from back home, I know that it was God's will for her to find us b/c there are twenty something floors on that hospital and she found us and was able to pray over Dylon, his surgeon and his anesthesiologist. The surgery was complete almost 10 hours later and all was well. We stayed in the hospital for about another week or so and flew back home. We will go back every six months until we are told differently.

I never knew the affects that CHD's have on so many kids. Along this journey I have met some amazing mom's who's kids have CHD's and it has helped so much to have support from someone who understands what you are going through. If your child has a CHD please email me or comment, so we can fight this together. My goal is to help raise awareness for CHD's, in hopes that oneday there will be a cure for this.

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