Friday, June 12, 2009

finally! a chance to update!

we got to come home tuesday night, and it's actually been a little easier than expected. wednesday, a nurse had come by for a "well visit" from CHOP, and i think she was a total moron. she measured justin's head circumference, and didn't tell me what it was, so when i asked, it had increased to 37.1cm (it was a steady 36-36.5 the whole two weeks he was in the hospital). she didn't even know what it was prior to coming home, so when i told her that seemed like a big jump, she did a total 180... she started calling everyone she knew. she called neurosurgery, the spina bifida clinic coordinator, everyone you can imagine. the woman that returned my call from neurosurgery was absolutely NO ASSISTANCE to me, whatsoever. the next morning, i made a phone call to neurosurgery to have justin seen for a follow up to make sure he was doing okay.

the nurse that i spoke with on the phone was the person we saw for our visit on thursday (of course). she said that it was a good thing we brought him in, that the doctor would probably admit him and do an "emergency shunt surgery" on friday morning. a few minutes later, the doctor walks in, hoagie in hand, mouth full, feels justin's head.. asks if we had any ultrasounds done, and walks out. the nurse follows him, and when she returns, she says that the doctor decided that we could probably "make it til thursday or friday of next week" since his ventricles haven't increased. i am not pleased whatsoever with these doctors. i'm not a genius, and i don't know the ins and outs of neurosurgery, but they treated us like we had absolutely no idea about anything relating to spina bifida/chiari/hydrocephalus. at this point, basically, we are just keeping an eye on him and watching out for certain signs that his fluid has or hasn't increased too much.. and if so, we will just have to take him to the ER according to them.

on the other hand, justin had his well care visit at the pediatrician today, and they were absolutely fantastic. zac and i were quite pleased with everything, from the waiting room to the staff. they were friendly, pleasant, and they even gave us free formula! can't complain about that! he is up to 10lbs, 3 oz, and he's 21". his head circumference was still only at 37cm today, so the doctor didn't really seem too overly concerned but offered for us to come back at any point in time just to have his head measured or if we had any questions about anything. his pediatrician is kid's first, which is affiliated with CHOP, and it's really a shame that our experience (and ONLY experience) with neurosurgery was so bad, because they've ruined it for us completely. zac and i didn't have a single complaint until we dealt with them. we loved the doctors and the nurses at CHOP while justin was there, and one tiny little visit with these people who think they're better than everyone and anyone ruined it.

otherwise, he is doing great. he's doing awesome with his breathing, too. it seems as though the oxygen alarms go off rarely during the day, compared to what they did while he was still in the hospital, and last night, they didn't go off even once. zac and i have been taking turns waking up with him at night since he has to be cathed every 3 hours, but we're making it work. it's a nice balance between the two of us.

he is starting to pee on his own a litle bit too. every diaper seems to have a good amount of pee in them, and we just cath him to make sure he's empty. wednesday and today i was lucky enough to have him pee all over me. i never thought i'd be thrilled to have a baby pee on me, but it makes me feel like a true mother to a baby boy. he streamed pee across the living room and i was so excited. i'm pathetic, i know.

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