the appointment.

the appointment didn't go as expected. and i guess that's what I get for having expectations. actually, these past 2 weeks should have taught me that if nothing else to knock it off with the expectations because nothing as in no thing ever really goes as expected does it??? Didn't that little snafu with that stupid epidural teach me anything...apparently not...

Anyway here's the update;

Saturday evening; Madden begins to feed slower, act fatigued again.

Sunday: acting restless, somewhat fussy but seemingly too fatigued to really protest, def not feeding well like before. something happened Saturday afternoon and he turned a corner into sleepy land again. :(

Monday- same as Sunday only feeding a little slower now and more fussy/restless when wakeful.

Pulmonology appointment;

Dr examines him and wants the x-ray bumped for madden to be next. Got the x-ray and 10 minutes later we stand before the screen and see that not only are the spots still there, but now there is a new very large pnuemothorax on his left lung, and the length of his left lung. The center "pocket" appeared to be smaller although he said that it could "appear" smaller because of compression or displacement of this new larger pnuemothorax combined with the other pressing inward.

So now he has three out of three pleural cavities affected with pockets. We were not at all expecting him to have a new issue. It was a huge surprise, a bad one. He is very tired & uncomfortable and having difficulty feeding because he's using all his energy to maintain stable breathing. He has an appointment next tuesday for x-ray and probably ct scan if he doesn't end up needing it sooner in-patient (only reason holding off is radiation exposure). The doctor stressed and prepared me fully that Madden could turn a corner for worse and end up in NICU at Scottish Rite anytime if he can't handle the work of breathing through this with his lungs under so much stress. So we are monitoring him very close here at home while we can & watching for the first sign we need to take him back. So we wait. We wait and hope that he gets his energy up and starts to pull out of this on his own without a trip back to the NICU. He's a strong boy, he's been through so much and fought like you know what to get through all of that, he'll get through this too. But still, my sweet baby needs to catch a break. like right now. his mommy wouldn't mind one either :((.