I feel like something is being missed with my baby and thought I’d reach out and…

I feel like something is being missed with my baby and thought I’d reach out and see if anyone else had any similar experiences and could offer insight. (Of course I’m not looking for a diagnosis on FB)
My 6m old is neutropenic and has been every month except one, had malena (blood in stools) for 2 months which has self resolved but he still acts in pain with his milk, this did cause a bottle aversion for a while too and had respiratory issues with little answers. He had one episode where he bled really badly from a tiny tiny scratch but all his clotting screens are normal.
He has extremely high work of breathing, resps anywhere between 20-95, drops his sats frequently, especially when sleeping but it isn’t limited to sleeping. He would sit low 90s in his sleep but can drop as low as 70 but only briefly. They have diagnosed tracheomalcia but no other lung issues. Also has pectus excavatum (dip in his sternum).
He is a very jerky baby, it’s as if he can’t sit still at times, even when calm his wee arms, legs and even fingers are moving frantically. There’s been times I’ve caught his pupils oscilating. (They have never investigated for seizures) . His liver function took a hit once but self resolved, his spleen is mildly enlarged. He is a a big baby , >99th centile for height, weight and head circumference so definitely no failure to thrive lol but he isn’t a huge eater.
He has started choking at times on his milk (thickened with carobel) , but has never had an issue before and has been assessed by SALT previously. (But can take a bottle in his sleep without choking!)
He is mildly delayed in terms of gross motor skills, he isn’t rolling or pushing up on his hands and has a weak core. Physio have said it’s probably just because he has had a rough start to life and multiple hospital admissions. He does spend long times of the day playing on the floor and tummy time multiple times most days (but can only tolerate a few mins) The Drs are saying that non of his symptoms are connected and that it’s just a strange coincidence that he has multiple issues.
I really hope this post is allowed , I assume that there’s not gunna be anyone with all the same symptoms but any solidarity appreciated. I just have that gut instinct that something else is wrong and is being missed!


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