Shawna
My name is Shawnna and I am 28 years old and live in Texas. I have 3 kids - 2 boys aged 12 and 2 years and a girl of 5 years. When I had my son Austin in February 2001, I thought it was going to be GREAT but little did I know he was sick when the Nurse gave him to me to feed. He looked like there was something wrong with him. He started turning colors on me and the Nurse told me oh it's just you being a new mom and all. There were about 5 people in the room who said there is something wrong with this baby and it's not the mom. Nothing was done about it and we were sent home two days later.
We were home for about 25 hrs and he stopped breathing all together so we called 911 and he was rushed to the ER. The ER doctor told us, “I am not sure why your baby turned blue but I don't think he stopped breathing.” There was a doctor that was passing by the room we were in and saw the way Austin looked and he told the ER doctor there is something wrong with this CHILD so they put him in for 24 hrs. He went home on a apnea monitor. That way they could see how many times he stopped breathing. We were home 24 hrs and he stopped again. This time we had the monitor and it showed he stopped for 28 sec. So we took him back to the hospital and we were sent 65 miles to a hospital were he had to see a Pediatric Pulmonology doctor.
He was in the hospital most of his first year. I think we may have had him home 3 weeks out of that year. Then Austin started having seizures and his lung doctor didn't believe that he was having them so I told her, “Either you find out what's going on or I find a new doctor.” She did and it was true he was having them.
He had to see a Neurologist and this is where the sad part came. He told me that Austin may have Tuberous sclerosis (TS). The past 2 years have been so bad. We were told he might have TS, Seizure disorder (SD), Cystic fibrosis (CF) but no one knows!!
He is seeing new doctors now. We have to drive 8 hrs to see them. He is seeing a lung specialist, Immune and Hematologist. His neurologist flies to see him every two weeks.
Austin has seizure disorder, Reactive Air way Disease, Gastro Esophageal reflux, Recurrent Pneumonias and Ear Infections and also Low Neutrophil Count and Low white blood cells and also has problems with weight gain and growth. And now they tell me he could very well be having Pancreatic Insufficiency
Thanks for taking a look at my story....Shawnna
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