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.

Monday, September 17, 2012

Feeling Better

Today Natalie has improved greatly.  She had a CT scan taken of her lungs.  The main reason for the CT scan was to ensure that the noudle on her lower right lung wasn't growing.  It remains the same...which continues to reasure our thoughts of that spot being scar tissue rather than a fungal cluster.  The CT scan did confirm the pneumonia.  The blood cultures came back posivite for gram positive cocci cluster (bacteria).  The antibiotic to kill this bacteria is Vancomycin.  I'm not real excited about Vancomycin, as it can damage hearing.  Natalie has hearing loss already, so we hope her hearing won't be bothered more.

Alice came to clinic, she was happy to visit Natalie and Natalie was happy to see Alice.  I didn't let Alice climb on Natalie's bed or get to the event that she might catch what Natalie has--not sure if it's anything that can be passed to another.

Alice's counts are great.  She didn't require any infusions or shots.  It was an easy day for Alice.

Hopefully Natalie can come home soon.  There is a possiblitity that she will need to come home with a PICC line to finish the IV antibiotics.


Taking a walk downstairs to CT scan.

CT scan

We went for an afternoon walk to help her lungs...she wanted to go to the gardens.

Hanging out in clinic.

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