Hana had another rough night and was up from 2-6am. Then we had to make her get up for PT/OT. She perked right up and we had a good morning. Her IVIG ended at 10:30, after which she needed bloodwork. In the afternoon she took a long nap. We finally woke her and took her out with the nurse to the library. She was not excited to get out and threw up in the library. Then we took her to the outside atrium and she was cranky and wanted to sleep. Something wasn’t right.
Back at her room they took her temperature and it was pretty high. Her heart rate was high and she had intermittent labored breathing. That’s was things started to tumble down. Doctors and nurse practitioners started showing up. She had multiple blood draws and 4 attempted urine catheters. They started IV antibiotics and she got a chest X-ray. They mentioned going back to the CVICU.
I’m too tired to tell the whole story but it was very tense and I cried and then they finally decided that it was most likely a delayed reaction to the IVIG. We were all stressed and worried. We didn’t really get a chance to even eat dinner! My mom leaves in the morning and it is going to be hard not to have her help (and of course we will miss her).
Hana's Heart 
Thoughts and prayers with you all! It probably feels like things are falling apart all around you-your mom leaving, Hana’s fever and the lack of sleep…just remember, it’s another bump in the road. The doctors and nurses are doing their best. As a good doctor friend once said, there is a reason it’s called ‘practicing’ medicine.
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Praying for hope, strength and grace to surround you and feel palpable to you. The pictures you post of Hana continue to remind me how incredibly resilient she is.
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Pat and I continue to hold Hana and all of you in our daily prayers.
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