The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Saturday, October 19, 2013

Windows, Day +2

I remember now how frequently the windows of Alice come to a close when she is a couple days removed from her new marrow transfusion. This morning started well with her waking up and asking to watch a movie or solve a puzzle. Her pleasantness was soon replaced with a session of being sick and laying down. She needed a platelet transfusion today. She was able to take a long nap. The nap was good for except that it came with a trade off. While her body was getting the rest it needed, all the bacteria in her mouth was punching in and looking for overtime. They got it, she slept for four hours. By the time Alice woke up, she was complaining that her throat hurt when she swallowed and her mouth was tender. Upon further inspection the roof of her mouth was showing a dull whiteness that was all too familiar. The headaches came on suddenly and before I knew it, we were ordering Oxycodone and morphine to kill the pain. She rolled around the bed in pain not knowing what to do other than cry. I felt awful, but did my best to make her feel comfortable. I rubbed her head and feet. By the time the morphine had been administered she was in more pain than I had seen in some time. It took ten minutes for the medicine to help her fall asleep. Her oxygen stats are low enough now that when she sleeps a nasal cannula is required to help her breath.


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