32 month son with tracheal stenosis and proper diagnosis next steps.
To all, and specifically to Dr. Jeffery Boris from The Children’s Hospital of Philadelphia
At 19 months a bronchoscopy was conducted on my son after frequent respiratory issues (mostly cough and some wheezing) and the surgeon concluded the ‘the trachea is compressed by a pulsating structure from the anterior and right side at about 1.5 cm above the main carina level. The resulting stenosis is estimated at 50-60%. The rest of the airways anatomy is normal however, there is some mucostasis and irregular subsegmental bronchi in the LLL raising the possibility of enlarged lymph nodes compressing those airways. BAL was performed on the RML and the LLL. BAL Grew H Influenzae 50,000’.
A follow-up cardiac echo one month later suspected an aberrant subclavian artery (left) and a CT angio was recommended, but we never did it. My son’s condition significantly improved (although he used Singular for a few months). The same paediatric cardiac consultant performed another echo at 31 months and suggested that it is not necessarily an aberrant subclavian artery. His report stated that ‘the echo mainly focused on the right innominate artery. The right innominate artery is seen to divide into a RSC and RCC. Another vessel is seen below this and the course of this arterial vessel is really unclear’ (i.e., origin and final course are unclear). Another echo was done at a private clinic, and all - convulsively- agree that the heart is in "perfect" condition. His oxygen levels have always been at 98-99% percent.
With the exceptions of some nightly coughs, which are significantly less severe than last year, my son wasn’t feeling well the last week due to some pain in his throat, he says. He hasn’t eaten well and his lip was slightly purplish and a bit cold for a brief moment. He vomited a couple of times but is otherwise active. Doctors here suggested that this is unrelated, however, and could be a sour throat.
Otherwise, our son seems well to us, but a CT angio was strongly recommended to us and we are extremely concerned about unnecessarily exposing him to ionizing radiation; his grandmother passed away due to colorectal cancer.
We are wondering whether further tests are necessary at this stage? Maybe another bronchoscopy, instead of a CT angio? Or maybe an MR angio.
Please help... my son feels and acts fine and is very active, but yet everyone is pushing us to do a CT angio!!
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