So a couple weeks ago we did a fairly routine tests. a Lung perfusion scan. its to see how mcuh blood flow is going to the lungs. We her cardiologist called a week later to let us know that Lilia;s left lung was only functioning at 6%. they thought that maybe her PA was blocked by maybe her stent (which is in her airway) or a blood clot. So they rushed us to sick kids and she had an ultra sound, an x ray, and an echo. then a week later we came back to sick kids to have a procdure done in the cath lab to see what was going on in that lung, and maybe stent it if there was a blockage like they thought.
So after a stressful 2 hour prcedure (that she was put out for) they came back to tell us that in fact there wasn't a blockage at all so they didnt do anything. Lukily that meant after 6 hours in recovery room she was allowed to go home.
However the bad part is we thought this would explain why her lung is collapsed and fixing it would save her lung. Now we have no answers as to why her lung is not working, and it seems to be another check for getting rid of the lung all together.
We are currently wiating to hear back from ENT to see what the next step is.
