03/14/2026
Hey y’all, just wanted to give everyone an update on James. He’s doing good and has recovered from the surgery really well. He got the catheter out yesterday and we’re monitoring him for any issues using the bathroom and fever for the next few days.
We got so much info from the pulmonology visit on Tuesday. James has Ciliary Disfunction and likely Asthma (but they mimic and will be treated the same). Imaging and testing showed he has edema in his lungs, both bottom lobes are collapsed, and his brachia’s have congestion. We will have to travel back for a procedure for this on 7/8. Until then, he will need to do airway clearance at home with a nebulizer, inhalers, and pulmonary PT. This is likely the cause of his grunting and is why he always appears to be breathing more rapidly or harder.
They pulled labs for allergies too because his Eosinophil IgE markers were elevated and have been elevated almost every time the test is run, indicating he has allergies and can be a contributing factor to his grunting and pulmonary congestion.
The pulmonologist also referred us to see an Otolargology and GI for when we come back in July. We’ll see them on 7/6, 2 days before the procedure to establish care so they can do a triple scope on James. She wants to check his throat to make sure there isn’t any issues to his Larynx from being intubated so many times and for such extended periods of time. They also want GI to scope scope him to evaluate for reflux and from his right-sided stomach and malrotated intestines.
Boston has been good to us but we sure are ready to get home!
