Today is a week, I think, since they pulled the vent and she started withdrawing from morphine. Its been difficult just watching Everly go through it, I cant imagine what she is actually going through. She's still on her withdrawal meds as well as some other sedation (though not narcotic) meds to try to keep her out for some of it. When she is awake, if she's not miserable, she's mostly a zombie baby, looking right through us. Some days though she would be awake, and actually lock eyes with us, so I'm happy that she at least knows we're here with her. I've gotta say, its extremely aggravating watching her go through everything, then throw withdrawal on top of it, and once again Erin and I are relegated to hand holding and being a cheer leader on the sidelines...I just feel like I should be able to do something to help her, its what I'm supposed to be able to do as her father, right? Its at times an infuriating feeling of complete inadequacy, something I doubt I'll ever get over, even with her future surgeries.
At any rate, she's getting better, and she's been down to only 1 line going in her for a while now, they use it to give her meds and do blood draws, I for one am happy they havent had to poke her yet to get her blood, though I'd bet a lot that we wont leave until its happened a few times. The line she still has is actually going directly into her heart, it doesn't take but a few seconds for her meds to hit her when she's really agitated and worked up she calms right down. I've been staying awake with her through the nights lately and sleeping during the morning, she's had a few rough nights (and days, not to take anything away from Erin) but she's been slowly getting better. The first 3 days were the worst, and she's made noticeable progress with the level of pain/ agitation since then.
We're hoping that we'll be out of the ICU in the next day or so, and with any luck be home before the 4th of July. If we're still here though, it won't be the end of the world, if Everly needs to be here longer, we will too. This wont be much of an update I guess really, not a lot has changed lately, but I got nothing better to do at the moment, figured I'd fire out a quick blog though.