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 27, 2012

Long Night For Alice

Sometime after I went to bed, I had a hard time falling asleep as I listened to Natalie cough on occasion.  I got up to give Natalie her Albuterol when I heard Alice coughing/gagging.  I quickly ran into her room and saw that she had vomited all over.  It was terrible.  Her central line was drenched.  I had to give her a bath to clean it all.  She wasn't happy about being woke in the first place then placed in the tub.  She just wanted to sleep.  Unfortunately I also had to change her dressing.

I was thankful Tyler came to help.  I didn't want to wake him, but was relieved to have his help.  We put her back to bed.  This happened another three times along with terrible diarrhea.  All hours of the night, she would cough and I immediately had the pink bucket under her as I sat her up...then would have to change her diaper each time.  By morning I wondered if a train ran over me. 

Tyler and I were confused as she did not have a fever.  We were thankful yet confused.  We wondered if maybe she ate something bad, or the flu vaccine was making trouble, or she had caught something.  We were expecting to have another hospital stay, although, by morning she was okay.  She kept her breakfast and medicine down, and hasn't had trouble since.

We are not sure if we have only seen part of something or if her body really managed to get over something on it's own.  We hope it's gone and that the other children do not have similar symptoms.

Tyler wants to sleep with her tonight and keep an eye on her.  I am looking forward to a good night's rest.


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