Some Not So Encouraging News
After a wonderful blog this morning, we have some sad news and need your prayers! In Baby Paul’s newborn screening blood test his IRT levels were evaluated and came back “high” two different times. In infants with cystic fibrosis IRT levels are elevated so obviously we were very scared of the possibility of CF in our little one. There is no correlation between CF and HLHS. The next step in testing is genetic screening and fecal elastase testing. We got the results back today from the fecal elastase test and things did not look too good. Paul’s levels were 112 (normal is 200). This does not confirm CF as a diagnosis but makes it more likely. On Monday, we will be doing a sweat chloride test to determine once and for all whether or not Paul has cystic fibrosis in addition to HLHS. Please pray that he does not have CF or any other major disease associated with low fecal elastase levels/ low pancreatic function. We will know for sure next week and need all the prayers we can get.