When To List

I feel like my life revolves around preventing vomit. I change up the morning feed combinations to try to find something that works. Yesterday, she still vomited during her morning nap. Today, she vomited before her bath. This one is my fault, I think. I was attempting to make something for dinner. Hana was in her high chair where she is supposed to be playing with food (and hopefully putting it in her mouth) while also getting her tube feed. Well, she was cranky and started to fuss and I just needed a couple more minutes to finish. Unfortunately she fussed too long and she started to vomit. I should have responded sooner. I should have let the soup I was making burn. Or at least turned it off. But I am always trying to squeeze just a little bit more out. So, if I had picked her up sooner she wouldn’t have vomited. Maybe. Is this my fault? Maybe. Maybe I think somehow, I done something to deserve all of this.

I was really hoping to have some non-vomit days. We will try again tomorrow. Hana has otherwise been quite happy. She’s been talking a lot, or using her voice a lot. She’s been napping fairly well too. She seems generally happy. I hope so. I hope she is feeling well in between throwing up. I hope she starts to gain weight again.

We talked to Hana’s cardiologist at Stanford on the phone on Friday. We wanted to talk more about when she should be listed for a heart transplant. They will strongly advise when they think it is time, but its hard to guess the perfect time. Kids are waiting longer on the list then they were last year. If we list her too early, anticipating that she could wait up to a year because she will go at the bottom of the list, she could possibly have a match the next day and it would be transplant time, thus forgoing another year she may have had with her own heart. Then the clock starts ticking on her new heart. If we list her too late she may need to get a Berlin heart, in which she will need to stay at the hospital (and she will automatically move up the list). They said it will be outside signs, not an echocardiogram or bloodwork, that will be the best indication as to when to list her – if she is not gaining weight, if she is failing to thrive and develop and grow, if she is not feeling well most of the time, then it is time to get a new heart.

It is tricky to say what is best. Things change after a transplant. For good and for worse. Its hard to know how to decide. I was leaning towards listing her early, but then, I think about what might happen. Mortality rates go up every year post-transplant. I think about her being on the Berlin heart and I am scared about the complications – stroke, brain damage. Maybe it will all be fine. I don’t want her to get a heart transplant. I want her heart to get better. I want it to heal and be normal. I want her to have her heart and be healthy and thrive. That is what I want. That is what I hope and pray for.

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3 thoughts on “When To List

  1. I know that has to be a very hard decision to make. But I also know that you and Paul will make the right decision! I am praying that y’all will have the best guidance in this so that you will feel comfortable.
    We will be supportive with whatever the decision is.

    Liked by 1 person

  2. Don’t blame yourself Kathleen. That adds to your burdens that you already bear. This is nobody’s fault. This is mortal life. You just keep doing your very best, and let the rest go. I pray each day that you will feel your burdens a little bit easier to bear and a little lighter, through the strength of a loving God and through the strength of your friends and family who love all of you so much.

    I also hope you will get the guidance you need as you make this important decision. I hope everything will fall into place for you and feel right, that you will feel at peace.

    Hana is so sweet. I love her little baby legs in those bright red leg warmers! Hana is in our prayers every day and night, individually and in our family prayers. May you feel the power of those prayers, amid the many many others being offered for you each and every day.

    Liked by 1 person

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