Rejection

I wanted this next post to be about how great the Summer Scamper was (It was great) and how much fun we had (a lot) or how amazing our team was and how we can’t wait to do it again next year. But instead it’s about rejection. Yesterday Hana had her 1st annual biopsy. We got the results today and Hana has 3a rejection of her heart. It has been a real blow. The rejection scale is this: 0, 1a, 1b, 2, 3a, 3b, 4. 

Most often 3a rejection means that you are hospitalized while they treat you with steroids, but since Hana is doing great clinically, her echocardiogram looks good, the pressures in her heart are good and her coronary arteries look great they decided it’s better to treat her with oral steroids and keep her out of the hospital. So she starts back on steroids tonight and all the medications that go along with long term steroid use. She will be on steroids for 4-6 months. She will go back to the Heart clinic next week and will have another biopsy in two weeks. They also went up on some of her anti-rejection medications. I hope and pray her next biopsy will show no rejection and we can go on our first family trip in August!

With this news, all kinds of thoughts have bombarded my head. Many are dark and terrrible or very sad. I’m trying to stay positive and remember what’s happening in this moment. At this moment Hana is doing great! Please keep her and us in your thoughts and prayers. We are hanging in there, although I’m especially exhausted today!



9 thoughts on “Rejection

  1. So saddened to hear this news. You and your family are always in our prayers. Sending lots of angels your way.

    Margie Gehrmann

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  2. I work with your sister in NY and have been following your blog for a while. I tell Therese all the time that you must be the strongest woman on earth. You’ve been through so much with Hanna. It’s incredible. YOU are incredible. You and your daughter are fighters and while I don’t know you, I can tell that you are so strong. Don’t let those dark thoughts creep in. Nothing can bring you down, do you understand? You are one fierce female and you and Hanna will get through this. My thoughts and prayers are with you.

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  3. Hi, I am a researcher for feeding difficulties in infants and would love to use some of the gorgeous photos of your daughter eating with her NG tube in my research presentations. I can’t find a way to contact you directly. Please get in touch 🙂

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