Rain is pouring

Man I am not sure I am going to make it.  But then I think about my little saying... "When it rains it pours and when it pours you just need to dance in the rain."

I am not holding my breath but I spoke to the pulmonologist about Rhett's CT scan and he read me the whole scan.  This is what I came away with, compared with the previous study it didn't sound too good.  So get this a mL and a cc are the same thing as far as anyone has ever told me.

There is scattered air sacks in the right lung that will no inflate as much as they should be, because he just doesn't have the room and the negative pressure to fully inflate all the way.  According to the CT scan it is similar to the prior study.  There is still a tiny bit of fluid around his right lung, but nothing too serious.  So far so good I guess.  I mean there isn't a big difference from the previous study done in October 2010.  I am glad that they have something to compare this new CT scan taken in May 2012.

They were also able to compare the lung volume and this is what they informed me of, in 2010 his right lung estimated to have 520 cc and the CT scan he had taken just this month his lung volume is estimated to be at 391 cc.  His left lung in 2010 estimated to have 389 cc and now it is estimated to have 326 cc.

WHAT!!!!  You have got to be kidding!!!  He had surgery on his right side of his chest to help open up his lungs and give him more lung volume. 

 When I was getting all this info from the doctor he was not convinced that they are accurate but they have always, and I mean always have gone up after ever surgery to expand his chest, but he is still wanting to get another PFT to be more accurate on what is really going on in his body but we have to wait and have that test done in August to give his body some time to heal before that happens.  Well now I know why his oxygen has increased and he struggles more.  But still his lung volume should not have dropped with them opening up his chest and have 7 broken ribs on top of that too.  What the heck!!

 I am not sure what it is going to turn out to be but I am also working on trying to get all the doctors in one place at one time and that isn't any easy feat.  On top of which I am trying to move up the genetic appointment that he has since it has been over a 6 month wait just to get in to see the doctor.  SUCKS!!!  I hate it when I try to get into the doctors office and they are like well the first available it 9 months from now.  What good is that going to do?

So now it is a waiting game I do believe.  I will for sure keep ya up to speed if things change.  I am grateful for all the support that we have received from so many different people, some that know us and others that are people that we don't know but just know us by this blog.  Thank you.