Today Hana was fast asleep with a heart rate in the 160s – that’s way too fast. Her temperature has been normal, thank goodness. She is very sleepy even at 10:30 am. So, the doctors scratch their heads and puzzle over this latest change. The heart failure/transplant doctors are worried that fluid is backing up where it shouldn’t and the right chambers of her heart are working too hard or are in failure. The CVICU doctors wonder if she is too dehydrated, except that her fluid output (they measure exactly how much fluid she gets compared to how much they can measure that comes out – they weigh her diapers, etc.) does not suggest dehydration. Her BUN and creatinine levels (from blood work) do not suggest she is overly dehydrated.
The attending physician looks at Hana and he thinks she looks very dehydrated. Her eyes are sunken, her lips and hands and feet are very dry. He said that BUN and creatinine are not reliable tests for children. He also says that her sodium has been on the low side for a while and that can wipe her out. He orders sodium replacement and some IV saline. The heart failure Doctor requests that they use her Power PICC to check Hana’s CVPs (central venous pressure) and he talks about doing an echocardiogram to look at the right side of her heart. By the way, Hana’s CT scan came back with no problems so that is a huge sigh of relief!
After the IV saline, Hana’s heart rate crept down, her CVP which was at 1 or 0 and that came up to 5 or 6 and Hana woke up and wanted to play! The heart failure Doctor was still skeptical but he did put off doing the echocardiogram. Hana should get one soon regardless. So despite feeling very stressed for a while this morning, it turned out to be a good day. Hana even got another chest tube out.
We spent some time in her room opening some packages and decorating while playing some Christmas music. I haven’t heard any Christmas music this season before today!
Hana's Heart 
The Christmas art work is great ! And glad you got to play some Xmas tunes. Prayers and thoughts for Team Hana !
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Praying for a great day today and a better everyday🙏🏻happy for all of you for some good news and for Sweet Hana wanting to play😌And prayers for Hana’s team, fir God to guide their hands and their minds and their decisions for her care🙏🏻🙏🏻🙏🏻
Thinking of you all and praying everyday. God’s peace and strength and mercy be with you always .
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I’ll be glad when those staples are removed. They look mean and they look like they hurt. I hate that they will be replaced by another set when she has her transplant operation.
When people ask me how’s she doing? I’m not sure what to say. There is no simple answer. Since they ask I try to give an honest answer. More often then not It’s how I’m feeling about it at the time they ask. Usually I tell them she is Up and Down and that it changes throughout the day. This is the truth. But I see small (sometimes very small) incremental positive changes after each down. I think this will be a long rocky journey.
I wait anxiously for each text my wife Marie sends. More importantly I wait for her call. I have found that words in Blogs and Text messages can only convey so much. You really need to hear their voice to understand the emotion behind the text. When people ask how’s Marie doing? The answer is pretty much the same, She’s up and down and changes with Hana’s ups and downs.
Kathleen reminds me that we can’t afford the luxury of a single negative thought. She’s right! And that’s pretty much how the day goes.
BTW in the Blog “Out of Bed” did you notice the stuffed reindeer with the scar and the Berlin heart? Marie is pretty creative and funny in her own special way.
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I wanted to respond to your fear of the staples being painful for your little grandaughter.. I had a row of staples in a hip replacement and didn’t know they were there even though I was laying on them for days (they were positioned where I couldn’t see them). I also didn’t feel any twinges or discomfort when they were removed. Of course I am a weathered adult but I thought this might help a bit with the worry about the staples.
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My family continues to pray for Hana constantly. Such a special little girl and such a brave fighter! God bless her and surround those who care for her with love, joy, and hope, especially at this time of year ♡
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I’m so glad that Hana had a good day yesterday. And YAY for the removal of another chest tube! She looks a whole lot lighter and freer. I hope they can resolve her hydration issue and that her energy continues to improve. You’re doing GREAT, Hana! 🙂
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