Something is off with Macsen

 Over the past 6 months or so I have noticed a slow decline in endurance, an increase in blue spells, and his oxygen levels have dropped from 94 after his last surgery in 2015 to anywhere from the 50s-80s. I struggled to make his team understand what I was seeing. His teachers and therapists are all saying they see what I see as well.
 We had appointments in Philadelphia set for the end of December but 3 weeks before our flight out they called to cancel - said they felt he was doing well and they didn't need to see us for possibly another year. They based this on the echo he had at CHOP at the beginning of August. They didn't contact me or his local cardiologist.
When I called to explain I felt he needed to be seen the nurse practitioner at CHOP dismissed all my concerns. When I brought up the decreased endurance she said the best thing I could do for that was make him exercise more and not carry him everywhere like he was asking me to. When I said his oxygen sats were falling she gave me a lecture on the fontan circulation like I was a complete newbie to this world. When I said he wasn't  growing well she said he looked great (even though he is not even on the growth chart.)  When I said he was having nightly leg pains she told me to medicate him every day with Tylenol - that it wouldn't harm his already vulnerable liver. On and on she went. I have never been talked to like that - not in 5 years of trying to navigate this world and talking to specialists in 5 states at many different centers. I am so angry. I am writing a few emails to let his CHOP card know what happened. But in the meantime I am bringing him to his local cardiologist. Something is wrong with my baby and I will make them see it.