02-19-2009 Zachary Update

Well for the day nurse he had sort of a rough day (well supposedly) when I came in I found his pulseox monitor not on his food very well so it was giving bad readings.

I did the "car seat challenge" last night and he did wonderfully. He got hungry near the end so I gave him a pacifier and apparently I wasn't supposed to "stimulate him" during the test so the doctor failed him and re-did it this morning. For those of you thinking this is a load of crap.. yes, I think she was just trying to screw with me any way she can. Ohh and when they re-did the test when I wasn't here he destated low for them. (I wonder now if someone didn't mess with his pulseox or even both to look if it was on his foot). What makes me go hmmm... was that if he truly did destat as low as she said (which seems impossible since he's never done that before, ever) she didn't seem concerned. That kinda tells me she may have known it was off or did it herself. So the result of this is we have to go home in a laydown car seat. I don't plan on using it since he did fine last night they can "bite me". I wasn't here for the 2nd test so I have no idea what they did or didn't do. For all I know they didn't burp him enough after feeding him that'll cause destats too. Honestly, this is really just getting retarded with some of these things. He does VERY bad lying completely flat so I bet he'd do worse in the lay down one than the sitting up one. Last night he was so happy in his car seat (until he got hungry) that he didn't want to get out to eat hehe. He wanted to stay in it and was satting very high oxygen wise.

We're in the what's called "care by parent" time at the moment. This is where he's only hooked up with our take home monitor (monitors heart rate and breathing). All of their monitors are off of him. So far he's been a little sleepy tonight but doing well. I'm starting to see a trend with him at this time of night that he only eats a little bit then sleeps a long time. Then he'll wake up and be famished eat tons and then stay up. So I think early evening/mid night is like his overnight lol. Hopefully, we can shift him where he sleeps these long period more during later night :).

So he's sleeping well at the moment and very quiet. I'm sure with all the monitors off and the nurses not bothering him as much he's sleeping much better.

The doctor decided to do an echo today to make sure the PDA really was closed or not. Funny how she orders all these tests last minute that I'd asked for a while back that she said was unnecessary then. Also the upper GI yesterday. I'd asked for both of those a while back when she suggested he may have reflux (as most babies do). The only way to truly tell is with an upper GI. I wanted that done before medication to see how bad it was or if it was minor. From what the nurse who sat in on it said it barely came back up but the doctor made it sound much worse than it was and she wasn't even there lol. Way to try and justify the nasty meds she's been giving him.

So do I think she's trying to Cover Her As... of course I do. I'm glad they did the echo and upper GI though gives me peace of mind of knowing how he's doing etc. We'll get the final results of the echo tomorrow. The tech who did the echo said it looked good overall and she didn't see the PDA so if it's there it's so small that it's not causing any issues. His heart looked good. To me everything looked normal so that's good :).

I do wish my last day here was a bit more positive I kinda got in the doctor's face about the car seat thing and explained that was not fair for her to fail him after he did so well last night. I was not told I could not do anything to him while he was in the seat since I'll be riding in the back seat with him on the way home. It's not like I'm driving alone with him places. I surely don't plan on that for a while.

His day nurse although nice she'd never had him before and I suspect that's why she had so many problems with him (well dstats that can be attributed to the pulsox monitor not working right).

All in all I didn't have any problems with him since I've been here and he's been doign well since. So.. this just backs up my position he does better in my care and therefore should be home where I can care for him 24/7 and then it won't be a problem anymore. I'm tired of him doing wonderfully when I'm here then I have to leave to go home and "something" happens. Odd how the 12-18 hours I'm here a day he doesn't do this. So anyhew I'm glad to be getting out of here tomorrow. Come hell or high water I'm getting him out of here. 4 months is too long IMO.

.. looking forward to some much needed rest and my 10 weeks off from work :)

S