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, September 16, 2012


Yesterday late afternoon Natalie came to me with complaints of her ear hurting.  It looked red and inflamed. She developed a temperature.  We gave her some Tylenol, her fever settled.  By midnight it came raging back.  She was at 103.5 degrees.  She was acting strange and seemed very confused and struggled to focus her vision.  She scared us.  We called the doctor, gave her some more fever reducer.  Things calmed down a bit.  She never broke her fever though.  By 5:00 a.m. she was struggling to breath and had slept very little.  We called the doctor again and the decision was made to take her to ICS.  Tyler brought her and met the doctor at the room.    

Upon arriving, she was given an IV, had plenty of blood drawn, had a chest x-ray, and did a nasal swab.  Her oxygen level was 66 (very low).  This would be the reason for the headaches, dizziness, and confusion.  They immediately started her on some IV antibiotics.  

Currently, she is doing much better.  The pneumonia came on incredibly fast.  She was fine and playful one moment, then the next she was ill.  We had just taken her in to see the pulmonologist four days earlier and everything was great.

She is already doing so well with only being in the hospital 12 hours...very encouraging.  The infection is responding well to the antibiotics.  As quickly as it came, we hope it will leave just as fast.  

Her oxygen level on room air is mid to high 80's...much better.  Her breathing is still painful but improving.  

Natalie seems content, and adjusting to another hospital stay well enough.  She just wants to be home for her Uncle Josh's wedding.

She told the nurse when she first came with Tyler at 5:00 a.m. that she needs to get home to see her uncles.  

I helped her shower and dress into some warm pajamas, then we sat in the window to look at the city lights. 

We have another great view...yeah!  She was asking what all the buildings are, and then she said, "When Dad worked in Salt Lake what building was he in?"  I showed her the general direction.  She then asked me, "What kind of job is Dad going to get when me and Alice are all better?" 

 I told her that I wasn't sure, then asked her what she thinks would be a good job.  She said, "I think Dad should be the night watch at the Museum". 

Before bed we played Uno and then watched our favorite (hospital stay) movie again...Enchanted.  

She is exhausted.  Tonight will be a good night for her to rest.  I hope Tyler finds some good sleep too.  He hadn't slept at all last night.

Tomorrow should bring more news...from the looks of things it should be good news.  

Alice has clinic tomorrow, and Natalie is looking forward to her visit.


Great news for Alice...I added a new post back dated for September 6th, that I had forgotten. 

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