Friday, November 21, 2008

Breezy's Story

Breezy's story begins on June 26, 2004 she was born 3 weeks early at 6lbs 7oz and 21 inches long. She was a very tall and skinny baby :) We were told that she was completely healthy and didn't question that for sometime. Breezy was a great very happy baby who slept thought the night from day one. One important part of Breezy's story is that she was not delivered by my OB. On the day i went in to labor my hospital was closed to deliveries due to a broken sterilization unit. So we were rerouted to another local hospital that was handling double the deliveries for those 2 days. We spent the usual 2 days in the hospital after her delivery.

For the next 4 months we took her to all of her usual check ups and immunizations with her primary care physician where we only received positive information about her health. I had concerns about her BM from early on. When she was just breastfeeding i was only worried about the foul odor that came with her BMs. When i consulted the physician about this i was told that she was fine.

When she started to eat baby food and again when she started on solids I consulted her physician about the consistence of her BM. Breezy had at the age of one never had anything other that a soft stool."baby poo" Again when asked her physician i was told "All kids are different" and that she would regulate when she was ready. NO TESTING was done at this time.
Eventually around age one Breezy BM became more consistent but remained pale gray, foul smelling and was accompanied by oil drops.And we are adding the symptom of distended stomach after eating. At this time we moved to another town and began to see another primary care physician. Still NO TESTING

On March 21,2007 Breezy was admitted to the hospital for extreme pain caused by a extremely distended stomach. When doctors ran a series of x-rays, blood test and kept her for 3 days. The final diagnosis was "she has gas" and they gave us a stool softener and sent her on her way.
After that we decided that Breezy must be intolerant of something that she is ingesting so we tried everything. Lactose Free, Gluten Free, any type of modified diet you can think of. Gluten free was working for a while Breezy's stomach was flat after eating and her stool was much more regular.

So that brought us to our current Gastroenterologist who tested Breezy for celiacs disease. And when that came back negative she did her job and investigated further in to what was causing Breezy's digestive discomforts. The first sign of cystic fibrosis was a deficiency in the vitamins A & K. Test results also reveled that Breezy had elevated liver enzymes.

Symptoms so far:
Light pale, foul,oily stool
Distended stomach
Low weight gain
Deficient in A&K
Elevated liver enzymes

After reviewing the test results we were referred to have a Cystic Fibrosis sweat test done on Breezy. A few days later we took her to have the test performed and it only took about 3 hours to get the results back. ABNORMAL if you know anything about the sweat test or your child has ever had on a salinity level on 60 is high Breezy's was 94 on one arm and 92 on the other.From the moment we got the results even with the possibility that we still might not be dealing with CF I knew it i could just feel it.

We went to a Nemours Children's Clinic on September 5,2008 and Breezy was admitted and we started our one week stay. On the 6th Breezy was officially diagnosed with Cystic Fibrosis. Even with 4 years of thinking something just wasn't quite right i was not prepared for CF. Bri is the best thing that i have ever done, I'm sure most parents feel that way. I wish a thousand times a day that i could take it away from her but i can't. So I'm helping her grow and learn and live healthy.

I hope that I can help someone anyone. Because the message is this don't be quite doctors do not know everything. Parents know when something is not right. Be your child's voice and insure that they get the proper medical care. If Breezy had been diagnosed as a infant she would have received 4 years of much needed treatments.

1 comment:

Alicia said...

So great to find you (from Lil' Chris's blogroll). You have a great blog, and what a story! I'm sorry Breezy went so long undiagnosed, but I'm thankfuly you finally had a doctor that saw it through to the end! I've added you to my google reader!