Two Weeks With A Berlin Heart

Today marks two weeks since Hana’s Berlin Heart was implanted. Despite the rocky road, it’s been a relief overall.

Today Hana got out of bed again with me holding her on a mat on the floor. She stayed there for two hours! She tried to stand up several times especially when she saw our friend Judy walk in the door! She even sat calmly on my leg when a nurse with the Vascular Access Team came in to draw blood and ended up just putting in a new IV. She was the most amazing person I’ve seen poke Hana with a needle and she admitted that she loved going around getting clean sticks on people, especially the more challenging kids.

Hana had to get more blood drawn because they keep messing up her blood draws. Hana has very labor intensive (in the lab) blood work to test her anti-coagulation, so that blood clots do not form in the Berlin Heart. Hana gets Heparin, aspirin, and persantine to keep her blood from clotting (too much, it still has to clot some). Unfortunately, they use heparin mixed with saline to flush the lines (PICC line, arterial line) coming out of Hana that can also draw blood. This is standard practice. That heparin adheres to the inside of the lines and contaminates the blood drawn to test for anti-coagulation. It’s fine for other blood work, but not this specific, labor intensive blood work that also requires a LOT of blood. Some nurses keep taking the blood from the wrong place, despite the sign in her room and the blood work order in the computer system. This is frustrating and when we try to mention it some nurses just look at us like we are crazy. The nurses that know, don’t need it mentioned. But when they don’t know they have to draw the blood again and the phlebotomists never get a successful stick. They poke and dig and Hana cries. Once, a phlebotomist tried to pull up Hana’s PICC line dressing to get a stick and the nurse got really upset. 

Not all nurses can have Hana as a patient. They have to be trained specifically on the Berlin Heart. That means we never have travel nurses, even if they’ve been trained with Berlin Hearts at other hospitals. Only nurses that have been on staff for more than a year can train on the Berlin Heart. Since there hasn’t been a Berlin Heart patient in a while (a couple of months) a lot of nurses want to get their training in, so Hana often has two nurses. It’s been good for me because I get to overhear a lot about the Berlin Heart.

It’s been a good day! Thank you for all the cards and packages!


6 thoughts on “Two Weeks With A Berlin Heart

  1. Beautiful!!! It’s just wonderful to hear such good news overall and that you were able to hold Hana today! Thank you for the amazing update. ❤️


  2. I love hearing about Hana sitting up on your knee and being so eager to be out of bed. She has such a wonderful spirit. I admire how meticulously you keep track of each change and development in her medication and care, to be her most loving, attentive, informed advocate. You also keep such a warm, embracing space for Hana as just a little girl, noting her interest in the world around her and her sweet spiritedness. I’m so grateful that I came across your blog through Sara Dunlop and that I get to know your incredible story. You are all in my prayers!


  3. How great to hear she is up and moving about, how much more wonderfull to hear that you were able to hold her for a time. She is a real strong little girl. We are all praying for her. Marilyn & Floyd Forman


  4. We are so glad to hear that Hana is able to get out of bed, and that you can hold her! We pray for you all regularly as a family.
    Anne, Tim, Joseph and Lydia Heinze


  5. We are so happy that little Hana is getting out of bed and making progress. She is brave and courageous like her parents. We continue to pray for your family for health and happiness.. From NJ.


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