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.

Tuesday, December 6, 2011

Broviac Line today, Alice begins tomorrow

We arrived at the hospital around 3:00 PM for Natalie to received her Broviac line.  She was in good spirits today as she happily colored and made a necklaces as we waited for the doctors.  It is incredible how well things go when your child is in a good mood.  It was a good thing too as we waited for two hours before she was taken back.  The procedure took the better part of an hour to insert the line through the right side of her neck and exiting out of her chest just above her heart.  In the recovery room Natalie's head bobbed and leaned as her brain attempted to recalculate her bearings.  She was extremely hungry from having to go without food for the day.  Her first request was for a hamburger, nuggets and desert.  She expressed of discomfort in her neck and chest as well as the annoyance of not being able to scratch the inconvenient itches on her back.  I made sure I assisted in scratching those itches.
Natalie showed resolved today.  She has done so in the past, however today she looked a little older and more experienced and anxious to get this done.  As her eyes still revealed a bit of fear, I also noticed today that fear was starting to take a back seat to her desire to become well.  Natalie will have a break tomorrow to rest up, while Lisy and I will take Alice in for the beginning of her preparatory meetings with the doctors.

1 comment:

  1. You guys are doing amazing. I love to hear how your sweet little ones are being buoyed up. We are praying for you all.