Sept 27th

We got up to Children's Hospital of Atlanta an hour early so we had 

some time to act silly while waiting.  Yet another sleep study to 

see how her sleep apnea is doing. Got a call from her pulmonologist 

Dr Popler, letting us know her diaphragmatic study under flouro 

showed she will probably not need a plication.  The right side of her 

diaphragm is working in unison with the left side although not able to 

open as much as the left.  All that means is the right side is still 

definitely weaker but at least it is working.  Then there is the issue 

of gas in her intestine which continues to push on her diaphragm

making it even harder for it to open causing the restrictive lung 

disease.  Her pulmonologist also suspects that is why her

little heart is rotated.

 This was by far the worse experience we have had with a sleep study.  The tech was just in a bad mood and made sure to take it out on my little girl.  As many of you know Adi has had a rough go with nasal canulas.  When she was a year old and were living in Utah, in order to keep her oxygen stats in the 90's she needed to be on constant oxygen.  Since our move from Utah to lower elevations she has not needed to be on it constantly but her memory of that time has scarred her for life.  At my insistence I asked the tech to hold off until she was in a deep sleep to come in and put it on her.  At 11:30 the tech storms in waking both of us and jams the canula in Adi's nose.  Of course it caused Adi to cry for the next hour and I just took it off knowing we would not get the most important info we get from her sleep studies-- CO2 levels.