A Lil' Boy's Journey to Live….

Update to today’s appointments with Dr Ryan (GI) and Dr Ruiz (ENT).
Dr Ryan shared an interesting study done in Boston that shows that lipid laden macrophages can be present in the lungs with or without reflux or aspiration. We have forwarded that information to Dr Josephson (lung transplant). Of course we know in years past that when we completely held fluids the lipid laden macrophages decreased in Riley’s lungs but more recent studies have shown that Riley wasn’t aspirating yet there was an increase in lipid laden macrophages. So the question is are Riley’s truly caused by aspirating or reflux or caused by something else all together? That’s what we are going to try and figure out.
When we met with Dr Ruiz he suggested doing FEES studies. It is similar to a laryngoscopy where they insert a small camera through the nose however with FEES Riley would drink liquids dyed green and they would watch through the camera what happens when he swallows. Where exactly does the fluid go. It was suggested to do it several times to get a better overall picture versus a single snapshot in time.
Now that Riley is 14 we can’t really be the ones to say yes .. he has to want to do it. In the office he wasn’t sure. Dr Ruiz did explain though that this could be the answer. Doing the FEES study could show if aspirating is really the problem and if it’s not it could open the door to being able to drink again. Of course once we got to the car Riley agreed to do it. So we’ll call tomorrow to schedule.
There was also talk about doing an endoscopy and placing an impedance probe, but we are going to do the FEES study first and go from there.
Fingers crossed that we are on the road to finding some answers.

#CHD #Heterotaxy #LoeysDietz #Transplant #Warrior #BeatingtheOdds Everyday. ❤️♻️💜

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