Justins story so far. This is let everyone know what our family has been going through since 10:44 p.m. this past Friday night. When my Grandson was born, the Doctor noticed that he had a blue color to his skin. This was an immediate sign that he was not getting enough oxygen. Tests were immediately started. It was then that a defect was identified with his heart. Orders were immediately written to Life Flight him to Brenners Childrens Hospital at the Baptist Hospital complex in Winston-Salem, N.C. That is when I left home like my backside was on fire. When I got to Winston-Salem, I found out that the Helicopter had just left Morganton, N.C. It had taken 5 hours just to stabilize Justin for the Emergency transport. My Son, Michael Hefner and I both had beaten the Helicopter to the Childrens Hospital. When he arrived there, he was admitted to the Neo-Natal Intensive Care Unit. Further testing was done and that morning a Pediatric team came in to inform us as to what the problems were. It was then that our world was turned upside down. I didnt even know that Justins condition could even exist. Justin was born without a Pulmonary Artery system. A condition known as Pulmonary Truncus Dysphasia. He does not possess a pulmonary artery, none of the blood vessels connecting the Pulmonary Artery to the lungs, and None of the Primary vessels which return the oxygenated blood back to the heart. The only vessels that he possesses in this area are called collateral vessels; very tiny capillary size vessels. He does not even possess the points where pulmonary arterial system can connect to the heart or lungs. I was so baffled, because by all rights, he should not be able to survive such a condition. We were then informed that he has a hole between the two ventricle chambers in the bottom of his heart, and this was what was keeping him alive, because the small amounts of oxygenated blood that is returning to his heart was mixing with deoxygenated blood and then it was being returned through his body. It was also discovered that one of his kidneys did not fully develop. He only possesses one correctly sized kidney. We were told that there was virtually no hope and that the only way to perform a transplant was that he would have to have a complete lung and heart transplant, all at one time, in one surgery. His chances of survival grew evermore slim, but we were also told that if he survived, he would always have a blue tint to his skin, because he just would not get the right amount of oxygen. We were also told that he may be mentally delayed due to the extreme oxygen deprivation. However, over the course of the past few days, Justin has fought for his life in a way that was not dreamed possible. He just refuses to give in. His oxygen levels are low, but they are higher than what was believed to be possible. His current levels are averaging between 85 to 91. It was believed that his levels would not rise much above 70. So...Currently, he is not on life support; he is no longer on dopamine, which was required to raise his blood pressure; his catheter has been removed and he is now wetting his diaper like every other baby, his blood pressure has stabilized in a normal range; he has been taken off of sedatives; he is producing normal amounts of urine; his blood ph is within a normal range; and he is becoming more and more active. All of this and only 4 days old. He has begun to baffle everyone. We know that our family has a long way to go with him, but he is inspiring us all. I just cant wait to hold him. Please keep praying for him, because that is the only explanation at this point. My Son is refusing to leave his side. He is going to need some help. He does not know that I am asking for help on his behalf. I am going to help as much as I can, but I am going to be requesting donations to help him and his wife for a short time, until he returns to work. If anyone has any advice in this area, please advise me. I would greatly appreciate it. You all have been so supportive, and Thank You, for being there for my family. You are the irrefutable proof that there is still more good in the world, than bad. I request that each person who reads this, to please share it on your own timelines. May God Bless each of you.
Posted on: Wed, 01 Oct 2014 02:23:01 +0000
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