A Note from Hazel's Mom - 08/29/2017


Hazel is out of surgery and our hearts are crushed.





She indeed has pulmonary arterial hypertension and the heart cath confirmed the





fears from her previous echos. Hazel's heart cath





showed the mean pressures in her lungs are 3 times what they should be. This





causes her right ventricle in her heart to work overtime, and the muscle to





continue to enlarge. She did not respond to increasing her dosage of





sildenafil, and showed almost no change when testing her with oxygen and nitric





oxide. The next step is to start a medication called bosentan, which helps to





decrease pulmonary resistance. This medication is very hard to get approved





from insurance companies due to it being very expensive. We hope to have it in





7 to 10 days but Dr. Fletcher, Hazel's cardiologist said it could take longer.





She will have to undergo testing of her liver monthly to monitor effects that





this drug can cause. If this does not work, the next step will be IV therapies.





Dr. Fletcher is a very straight forward doctor. He told us we are not at a good





point, so he wants to be very aggressive with her therapies. She also has





malacia of the trachea which is where one side of her trachea is not as open as





it should be. Because of this they want to do a sleep study to make sure she is





getting enough oxygen while sleeping. Babies with heart defects are 8 and





1,000, and of those babies, 1% have transposition of the great vessels, and of





those babies, .02% have pulmonary arterial hypertension. This is so rare and





and so few babies have it. They do not know the cause if this, but classify





this as World Health Organization, Group I, caused from her congenital heart





defect. 







We are starting from square one. We were to scared to ask her survival





rate. We know this is a very scary disease and if we cannot find a therapy that





works, it could be devastating. I don't want to think about devastation. All we





can do is give her the best life, be strong and positive, and pray the doctors





are able to help her. I want her life to be normal. I want her to be able to





walk, go to school, learn to drive, ride horses of course, go to prom, have a





boyfriend, go to college, get married, have kids, and most importantly, be





happy and have a quality of life like anyone else. We will give her so much





love. We have a very long road ahead, and I am scared how we will be able to





juggle work, 2 other kids, and all the doctor appointments she is going to





have. I know we will find a way. I want to thank everyone for their continued





thoughts and prayers. I know so many family and friends are following Hazel's





journey and hurting right along with us. Thank you for loving her and





supporting us.







I know God put her in our arms for a reason, and





even though we don't understand it, we are so proud to be her parents and her





brothers are so in love with her. I pray she will out lives us and modern





medicine will be on her side.

  • The Journey of Hazel Grace Nelson - #HeartofHazel

    “All we can do is give her the best life, be strong and positive, and pray the doctors are able to help her.”

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