A Lil' Boy's Journey to Live….

Archive for April, 2021

CT and CTA results are in ❤

Riley’s CT and CTA results are in.
The CT for his lungs did show some increase to the air trapping or mosaic air patterns. What that means is there appears to be more bronchiolitis obliterans or chronic rejection then at the last CT in October. Thankfully Riley is not symptomatic so for now we’ll continue to monitor. If symptoms started to appear that is when an open lung biopsy will be discussed but thankfully we are not there at this time.
The CTA showed arterial tortuosity or curvy vessels towards the back of Riley’s neck. Though it’s rare this is a typical finding with Loeys-Dietz. There was no aneurysms present. We did inquire if this could be the cause of Riley’s frequent headaches but have been deferred to Dr Licht (neurology) for those answers.
So for now like pretty much everything else in Riley’s life we monitor. Riley will continue to Live the Life he so Loves to Live and we’ll cross each bridge when we get to it.

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

Update .. 💚

Update .. Riley’s genetic testing that was pertaining to his kidneys has come back with no new genetic findings. The thought is that the kidney cysts are related to the previous findings of SMAD2 but aren’t completely sure at this time. Further research is being done.
What does this mean for Riley’s care as far as the kidney cysts? At this time we will wait to see nephrology again until October. People can live with the cysts forever without issue. For others it can turn into a bigger problem leading to kidney disease. We don’t know at this time which way this will go for Riley.
Honestly this is really the case with everything Riley! We just don’t know! So we’ll continue to face each battle as they arise and Riley will continue Loving the life that has been so Generously gifted to him.

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

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