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.

Wednesday, January 23, 2013

Alice is Home--Blood Transfusion

Alice came home yesterday from a 5 day hospital stay.  She did very well and enjoyed most of it.  She needed a blood transfusion before she came home.  It was a little odd that she needed blood.  Her hemoglobin was 7.  The doctors think it is possible that her low blood level was caused by a virus.  Nothing has come back positive yet, except Rhinovirus, which in the past has not reduced her red blood cells.

She received Neupogen twice and IVIG once while in the hospital.  Next week in clinic we will see if her blood levels have maintained.  We hope they do.

Alice is finally off antibiotics (IV and Oral), this might help her diarrhea improve.  We have been doing acidophilus intermittently, however, will start it more regularly. We are going to cut out apple juice, hopefully it will help too.  The apple juice was 5 parts water and 1 part juice.  Still it may have been contributing to the diarrhea.

It's wonderful having Alice home!


We love the comments and advice...even though we don't reply (time purposes) we are always up for trying things to improve our situation.  Thank you for the ideas...we hope the little changes make a big difference.

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