Berlin Heart

This morning, just like every Friday morning, the heart failure/transplant team met. It is a team of physicians, surgeons, Nurse Practitioners, social workers and more. The CVICU physician that was on over the night, joined them today to add his account of how things went last night.

They decided to recommend the Berlin Heart for Hana. They also approved her to be listed for transplant. Both these things are huge, heavy decisions. The Berlin Heart is a ventricular assist device – basically a pump to help Hana’s heart. It requires major surgery to implant and certainly comes with risks – mostly risk of stroke. With this device they hope that her heart will shrink enough to allow her left lung to inflate again.

Once you get a Berlin Heart you must stay on it until you get a transplant. Once you get a Berlin Heart you can not leave the hospital. They want to implant the heart early next week unless things degrade over the weekend. So what this all means is that Hana will be in the hospital until she recovers from having a heart transplant. Then we will have to live at the Ronald McDonald House for three or more months before we can go home. Once Hana recovers from the Berlin Heart surgery she will be listed as a status 1 on the heart transplant list, meaning they are the first patients on the list to match a heart when one becomes available.

Today Hana is relatively comfortable. She has a bit of a fever and her heart rate is high. They are starting another antibiotic and increasing her milrinone. She is also getting another blood transfusion.

This all weighs very heavily on us and will take some time to process. We have been so amazingly lucky to have so much support. We are so grateful. Now, things feel more fragile than ever. Hana is such a little trooper, she amazes me!

  

14 thoughts on “Berlin Heart

  1. Hard to believe it has come to this. Kathleen told me that she was still praying for a miracle. I cautioned her about that as the time for miracles seemed to have passed. She told me Dad getting a transplant is a miracle. And so it is. I am filled with gratitude for all prayers and concerns by so many people. Hana is blessed.

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  2. Well another way to think about all of this is that the doctors are ABLE to do these things now. That’s a miracle too! I know heart transplants are not brand new. But when you think about it, the first one was done in my life time. So Kathleen has a point… getting a transplant is a miracle! We just have to keep on praying that Hana does well through all of this. I’m sure it’s not a cake walk. And keep on praying that Kathleen and Paul can hold up too. May God be with you guys through all of this.

    You mentioned this taking time to process and its weighing heavily on you. YUP – I’ll bet so. No doubt. Just know there are tons of us out here ready to support you in whatever way we can. Even if we are on the other side of the country. And I’ll bet that as soon as you get used to this news you will learn all there is to know about a Berlin heart and transplants enough to amaze the rest of us!

    Love and hugs!!

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  3. My thoughts and prayers are with you during this most difficult time. May God watch over Hana and pull her through this challenging situation and grant continuing strength to her parents.

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  4. Sending support and love from Florida to all of you. I’ve followed Hana’s journey with deep feeling and heartfelt prayers. Try to live in the moment and don’t over think the future. It is never what we imagine anyway. Wishing you blessings, courage and peace. Anne (Terry Smith Anderson ‘ s sister)

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  5. Hang in there Hana! This is the next step on a long road but you can do it. You’re a fighter with a determined spirit. You got this sweetie!

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  6. May God’s peace be with you Paul and Kathleen as your dear sweet daughter is given a chance at life. Our prayers are with her and you as you walk through the valley.
    Love
    Aunt Jean and Dave Hedger

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  7. Love, courage, peace and strength to all three of you from our family! We have you in our hearts and keep praying and thinking positively knowing this shall all pass soon! Stay strong, dear mama! You are a wonderful parent! Hana will be looking at this years later in her life and be so thankful of all the care and love you have been providing to her. We hope you all had a better day! Hugs!!!

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