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.

Sunday, October 27, 2013

Day 10

Alice had a decent night, she is adjusting to the nasal cannula to the point that if she takes it off in her sleep and I hear the oxygen monitor alarm, I tell her to replace it to her nose and she will do it in her sleep, almost automatically.

During the day when she tires of the tube in her nose, she will slip it to her forehead; again when the machine alarms she replaces it to her nose with little coaxing.  However, the goal is to help her take in deep breaths to expand her lungs completely enabling the airflow to clear the small spaces in the lung where fluid builds up. We hope this and walking more will avoid unnecessary pneumonia.

The next adjustment is helping her learn to use the suction device that will clear her mouth; she will not swallow the saliva, due to immense pain from her throat.  Currently she spits into the bucket or a tissue every 30 seconds or so...sometimes holding it in her mouth for long periods of time.  I think of how badly I dislike going to the dentist and not being able to swallow...I can't imagine that day after day, night after night, with all the added sores and pain.  Poor sweet Alice.  Soon, it will heal...soon, maybe as soon as two weeks from now.

She received more platelets today.

Amber spent the day with Alice, I was able to get home in time to attend church with the rest of the family. It was great to be with them, and to enjoy the meetings.  I know Alice had a wonderful time with Amber. Uncle Adam and Aunt Karina came to visit, and of course Bentley.  Grandpa also came to visit.


So good to see her smile, they are hard to come by these days.

Spending the day with Aunt Amberly.
Aunt Karina, Uncle Adam, and little Bentley.

(from yesterday) Grandmother took this picture...when Alice first saw Grandpa and Grandmother she hid behind the pillow, not sure if she was worried or concerned about her bald head...sweet Alice.

1 comment:

  1. I LOVE Following your story. Poor little Alice. But you and your family are such a strength to me. Hang in there Fish Family