Until Christmas 2004 Caitlin had been a healthy child with no symptoms of any illness. After 3 ear infections after Christmas she seemed to lose her appetite, didn't drink and didn't want to play. Shortly after finishing her course of antibiotics that didn't seem to help, she developed a bad cough. After going back to the doctors they rushed her to into hospital with pneumonia. After various tests and a blood transfusion they concluded that Caitlin may have an underlying condition, but they were not sure if it was Ceiliac Disease or Cystic Fibrosis. With no CF in the family we thought it was highly unlikely.
One night she had a heart block, her heart rate plummeted through the floor and the doctors did everything to get her heart rate back up. It was very frightening as everyone believed we were going to lose her. The following day, after an ultrasound, Caitlin was immediately transferred as they had discovered a problem with her liver.
During the following 3 weeks variuos tests were done including 2 sweat tests. They carried out a liver biopsy and a bronchoscopy which eventually concluded the diagnosis of Cystic Fibrosis. A total shock for the whole family. Caitlin was immediately put on IV antibiotics, various medicines and creon (pancreatic enzymes) which she has to take with all her meals and snacks that contain any fat to help her digest her food.
Luckily her lungs are still in reasonably good condition but she has some liver disease which is consistent with CF - all be it very early.
Caitlin now takes 8 medicines a day orally, a nebuliser twice a day, and has to have regular IV antibiotics every 3-4 months to keep her well. We have to have physio every daytwice a day, this no longer involves back slapping but just energetic exercise, such as trampolining etc. It's very important to keep her active so that her lungs can remain clear, the more she runs, the more she coughs so the more stays off her lungs. It is a constant battle to keep her free from infections.
Caitlin also has a portacath fitted to make her IV's a little less traumatic. Caitlin also has a nasal tube, she has an overnight feed of high calorie drink to help build her weight up.
Caitlin has been remarkable and takes everything in her stride. We are very proud of her. We have a great support network in the hospital and home nurses, so between us we battle to keep her well.
Written by Caitlin's mum Julie
Caitlin is on Postpals ~ www.postpals.co.uk/pals/Caitlin+M