Thursday, November 20, 2008

18 weeks

Rhys was 18 weeks yesterday. Wow. His PEEP is at 4 and his oxygen requirement is better since the nurses aren't cranking it up at every turn. The nurse he had yesterday has had him three times now and I think she's finally getting it. Here are the problems as I see them, of course I am a biased parent:
(1) There is no transition from level 3 to level 2. We're technically still in level 3, but being staffed with level 2 nurses so it's almost even worse. They take you and your child away from everything you know and drop you into a situation where the nurses don't know the child and you've never seen the nurses. While this isn't a huge deal if you're in level 3 for a short amount of time, that is not the case with us. We were there for FOUR months! You lose your primaries and are forced to watch the learning curve with your child as the guinea pig. From what I've witnessed the nurses in level 2 might as well be on a different floor instead of across the hall given the amount of "cross over" I have seen. There is basically none - no communication, nothing to shed to light on a child's history. Is that the nurses fault, not really, but you'd think it would benefit all parties involved if they tried to give some sort of report. I don't know for certain if this is actually how it works, but it's what it seems like based on observations and conversations I've had with the nurses in the new pod.
(2) The situations you see in level 3 are far more serious and severe. Therefore the very minor issues from level 3 seem super serious in level 2 because they don't typically deal with very sick babies, or if they do it isn't as common. Yes, it is concerning that Rhys desats sometimes, but in the overall scheme of things I don't feel like it's that huge of an issue given all he's been through and overcome. As long as it is short in duration and he comes back up leave him be! If he needs a little more oxygen, fine, just don't panic and crank him up to 100% because he drops to 60 for a few seconds.

As far as talking to the nursing managers I am not there yet, though I've certainly voiced my thoughts to the doctors, his primaries, and the nurses who take care of him. I am over my initial mood and pretty much resigned to the situation. It isn't the nurses I am mad at (except the one who gave him ativan), it is the situation. I would have just liked some sort of transition and I know we aren't the only parents who feel this way. The doctor was supposed to discontinue the ativan order, but I think he hasn't yet. I am going to try to speak to him about it today. The ativan was a carry-over from a while back when Rhys did need ativan. He might still need it occasionally now, but I don't want it to be at the nurse discretion - a nurse who has never had him before. I would rather they have to consult a doctor before they sedate him for crying too much... and only 3 hours into their shift. So, it's going to take a little time and a lot of adjustment, but I think it will be okay. And if it's not then we will speak up again, because we are Rhys' only voice right now and I've never been afraid to speak my mind.

I have also recently thought more about the fact that Rhys is in his bed all day long. He occasionally gets the bouncy chair or is held, but other than that the majority of his time is spent lying down. Yes, that is true of term babies as well, but they get more interaction. So, I am making it my mission to talk to him, touch him, and interact with him even more than we have been. It's the small things parents take for granted that we don't have. I can't pick Rhys up and walk around with him. I can't stand and hold him on my shoulder. He has to basically sit still so he doesn't lose his tubes so that drastically limits the amount of things you can do for/with him. So, my new goal is to mix it up for Rhys (and for us) so he gets a little variety. I'm dreaming of the day he can take a ride around the block in his new stroller (that took mommy an hour to figure out how to put together because she didn't wait for daddy to get home to help her).


Jennie and Bernie McCoy said...

You're being such a great mom and don't worry, that day will come very soon when little man is off cruising with his mom in the stroller! *hugs*

amyoutlaw said...

Hang in there. Very difficult situation you're in. My heart really goes out to you. I'll give you a song idea - You are my sunshine. Works like a charm. Julian still loves me singing it to him and Max just stares at me when I sing. It's soothing, even if it's off key.


Angie and Jason said...

You two are amazing parents. Try to keep your head up, soon, you will be home with Rhys in your arms/stroller having the time of your life. IF there is ANYTHING I can do I'm down the street. I can't imagine how you feel. I love you! Hugs!