Healing Gardens

Naomi was allowed to go outside today for the first time in 10 days. She walked with Aaron to the Healing Gardens. They hung out there for about two hours. She was able to walk the whole way there by herself and a portion of the way back. While outside, her sinuses opened up and she was able to breathe so much better. Too bad that has not lasted through this evening. Her sinuses are giving her a hard time again tonight…. which is why I am writing this at 4am in between helping her blow her nose and using some oils to try to help her out. Nothing seems to work though.

Her siblings all did very well with their HLA typing blood tests today.  The only one to cry was Niamh (3). It required three of us to hold Niamh down. Poor girl. Caitriona (1) nursed during the test and seriously did not even flinch. She was amazing. Truly amazing! Micayah (12), Malakye (10)  and Lauryn (9) were all brave for their sister. Malakye was not happy that I snapped a photo. He said, “is this a blood test or a theater show?”

Naomi received a unit of blood this evening and perked up a bit after it was in her. She played some games on my iPad and spent some time with Lauryn. Her fever continues to come and go, spiking around 103.6 this evening. They did a blood culture sometime in the night Wednesday early night, around 3am, and we await those results. They did another blood culture late Wednesday evening, around 8pm, and those results will be a while coming. Every time she has a fever, they give meds to lower it and then culture her blood to see if an infection is causing it. Her doctor mentioned on Wednesday that the fever could be her white blood cells responding to the inflammation in her intestines.

Naomi has talked a lot about going home tonight. Those are the hardest conversations to have with her because we truly have no idea what the future holds for her and there is simply no mention of her being discharged. I cannot break what hope she has that she might go home soon.


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