Crushing - 10/19/2017 Update

Hazel Update from Jackie Nelson (mom): Today we had an appointment with Childrens Cardiology just to double check her pressures with an echo, and make sure there wasn't more then just a cold going on, hoping we would be told the echo looks better because of the new drug Bosenten that she is on. As I drove in to Children's today, the 15 year anniversary of my brother's death, I looked up at the big tall glass hospital and couldn't help but feel so much emotion. I lost my brother in this hospital 15 years ago, and now, they are taking care of our sick baby girl. We are so lucky to have them out our back door and I'm thankful for them, but I don't think I'll ever have a warm fuzzy feeling coming here. Hazel had some more very unfortunate news. Her lung pressures are 150/50 and a normal babies are 25/10. She is in a very bad place and is being admitted to the pediatric intensive care unit. She be undergoing surgery tomorrow to have a central line placed to begin IV therapy, that will follow her for the rest of her life. She is also not growing like they want her to, but has gained some weight since her last appointment. Our hearts are crushed, but I guess we're use to getting them stomped on. Her cardiologist, Dr. Fletcher, is going to treat this disease called pulmonary hypertension aggressively. He has reached out to colleagues in Denver, Houston, and St. Louis and has mentioned lung transplantation. But with transplantation, you trade one illness for another. Survival rate in lung transplantation in the 1st 6 years is only 50%. It's not a cure. I've never felt some numb. Hazel will not be at her benefit this weekend, but she wants to thank everyone who is coming and has donated and made this all possible for her. We are so fortunate to have you all in our lives. With everything so hectic I have not been able to get written thank you's to everyone, and my list of people to thank keeps getting longer. I apologize for the not getting them sent out but know that our appreciation to you all is overflowing. Hazel's condition is rare, and it's a trail and error to try and help her. She will never recover from this, but we hope we can slow the progression and she can sustain a life with quality. I hope my brother is watching over her and can talk God into a miracle. Please pray for her. Love and thanks to all. #heartofhazel

  • 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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    Raised $8,100
    Goal $20,000
    Campaign Closed