uggghhh, i hate this.
we are STILL stuck here in philly at the ronald mcdonald house, while justin's in CHOP. they're doing a sleep study on him tonight to check his breathing. we've pretty much narrowed it down to his chiari, but the doctor we had tonight put us in a damper of a mood.
she was a total moron.
zac and i had decided today that we'd take a quick trip home to re-vamp us for the coming days, in case there was a delay in getting justin home as quickly as we'd like. it was well worth it, despite how it was also bittersweet. it's painful to come home without your baby. i felt so bad leaving him here, but on the other hand, i felt so bad that i haven't been able to spend much time with madi... not that it mattered much, because when we got home, she had a brand new playground from poppy, and gram was home, so we were bypassed isntantly!
anyway, when we returned to the hospital tonight, justin's sleep study had begun so we weren't really able to do much to bond with him. we fed him, but we just sat him up in his bed to do so because they had him hooked up to what seemed like a million monitors and wires and everything else to make me sad. basically, we're waiting now to find out if his breathing is consistent and "strong" enough for him to come home on oxygen. we know there is a very high possibility that it's being caused by his chiari, but we don't know what type of treatment it will result in. there's been mention of decompression surgery, which i don't see, in my own mind/theory, as being beneficial. i guess i just don't see how it will really make things better for him in the long run, as he's got a lot of growing to do. so after doing research online, it seems another possible outcome could be a trach... and well, obviously, that just terrifies me. i know i shouldn't get ahead of myself, but i hate all this wondering!
more than anything, i want all of us to be home, together. it broke my heart today when madi asked us (at home) where her baby brother was.. this hospital setting is wearing me down. it's absolutely miserable.