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.

Friday, July 20, 2012

Colonoscopy for Alice

Alice had a colonoscopy this afternoon.  Everything went well.  She was anxious for something to eat and unhappy when she woke from the surgery.  The GI doctor (Jensen) said everything went well.  He said her colon looked as good as any.  This was reassuring.  The biopsy was sent to the lab.  We hope that pathology will review it sooner than later so we can determine if she will be able to eat and when.  Dr. Jensen did mention that he would be surprised if she has graft vs. host because of how good her scope looked.

Tyler stayed with Alice and I for a few hours today, until the surgery was over...then he went home to the other children.  Luckily things at home are becoming more manageable. 

Natalie had a hard time adjusting to her nasal cannula last night; It was a struggle for her and I.  I slept in her bed to keep an eye on her pulse ox and nasal cannula.  It took at least two hours for her to finally decide to wear it.  Throughout the night she would take it off...then her monitor would alarm as she fell below 90%.  I would roll over and tap her on the shoulder--in her sleep she would put it back on her nose.  This happened all night.  It's hard to get used to a nasal cannula.  Hopefully tonight will be a little easier for her.

Tyler and I feel like as she becomes more physically active she will no longer require oxygen at night.  Throughout the day we have her breath in an apparatus that is used post surgery to prevent pneumonia.  It really helps open her lungs.

I would love it if tomorrow we heard back from pathology on Alice's biopsy.  I'm crossing my fingers!

Lisy



 We had some visitors today all the way from California.  It was so fun to see the Slades.  Bonnie (Lisy's sister) has not seen Alice and Natalie since before transplant.  We are happy they were able to see us while in town. 

                                                      Cousins Jacob and Alyssa

                                        Alice peeking her head out just before surgery
Posted by at 11:31 PM

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