Paul and I went to our house last night. We picked up Poppy, our dog, and spent some time with her. It was my first time spending a night at home in 40 nights. At times, it was really hard to be home without Hana. It was sometimes sad and empty and sometimes that quiet emptiness creates the space to really feel sad and scared.
My mom stayed overnight with Hana. When we got to the hospital this morning they had just finished rounds. Hana’s heart rate has been high – in the 160s. They don’t know why. It has made me very worried. Hana finished her antibiotics last night so then you wonder if there is still some hidden infection, possibly in that lower lobe of her left lung. Her white blood cell count is up but that could be a reaction to the steroids she finished. Her temperature is up a little bit. But this could be withdrawal from Ativan. She is also throwing up – 3 or 4 times today, maybe it’s the persantine or the Berlin Heart pressing on her stomach or the volume of feeds or heart failure. Her other blood work results do not really indicate infection.
Today Hana had PT/OT and then after a short break they took out Hana’s surgical staples, chest tube and PICC line (they gave her morphine first). The chest tube removal caused a pneumothorax (a pocket of air, revealed after an X-ray) so they put Hana back on oxygen. They had to poke her for bloodwork and they need bloodwork tomorrow too so they just put in an IV so they don’t have to poke her tomorrow. They also changed her Berlin Heart dressing and had the doctor come in to look at the site to make sure they felt satisfied with the skin around the area. Then they did an EKG and an echocardiogram because they were worried about her high heart rate. It was a very busy day and poor Hana went through a lot plus she must have felt lousy with all the vomiting.
I am exhausted – mentally and emotionally. I think things are catching up to me and I need to do a better job at taking care of myself.
Day 41 in the hospital, Day 23 post-Berlin Heart, Day 14 on the transplant list.
Hana's Heart 
It is so hard to imagine that it has been 41 days since all of you have been at the hospital. My thoughts and prayers are always with you
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Hang on. A new year is coming. Yes you do need to take care of yourself. Glad your mom is there. Let others spell you. They want to help. Let them. An extra prayer for you tonight.
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Dear Kathleen and Paul…. Widodo and I are sending healing thoughts and prayers for you and your family, especially for Hana.
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You are an amazing individual, mom, wife and care giver! You are strong and inspirational. Prayers and wishes from – Boston
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As the doctors have said, there will be many ups and downs and you have a large support team behind you! Please do take care of yourself as you continue to be Hana’s strength and advocate. I also hope you loved up on Poppy-the unconditional love from a pet is so very comforting.
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Sending prayers of strength & hope for your little warrior..
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Keeping Hana and you all in thoughts and prayers🙏🏻
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Dearest Kathleen,
My hearts breaks for you and Paul and your sweet baby Hana. I pray that God helps you through this huge trial. He is the only One who can truly carry you through this. Call on Him. Yours, Mary Levine. (Suzanne’s mom)
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My heart is so full for all of you. I feel so helpless but I pray that God provides what is needed to save precious, little Hana.
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Here in NJ, we are keeping brave little Hana and you all in thoughts and prayers.
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