why is everything so difficult?
So Addison now has SOMETHING growing under her chin on her neck. They thought it was an abscess but the ultrasound appears to be too vascular at this point. The doc said it could still be STAFF but they caught it before it was full blown. They are treating with antibiotics for now and playing the watch and wait game.
They tried nasal cannula on Blake a few days ago and he didn't care too much for it. Today the decided to lower his pressure on CPAP to +4 a half hour after the change and 15 minutes after feeding he Bradyed. This always happens within an hour of his feedings so they are thinking reflux. Well ofcourse we have a younger nurse who isn't familiar with Blake so she tells the doctor and neglects to mention it was with his feeding. So now he is back to +5. What's even better though is the pressure on the CPAP isn't reading +5 its +4.....for whatever reason they can't keep him on the +5 and if anything the pressure alternates between the two.
I realize on the grand scheme of things this is nothing. But with Addison she has been having crying fits and her heart rate elevates. I have been trying to tell the staff something wasn't right but ofcourse we could figure it out, not that they listen. And last night Blakes fave was completely swollen and they had his CPAP straps waaaay to tight on attempt to keep prongs in his nose that are too damn small. Even after the practitioner telling the nurses the pink are two small. I am dumbfounded because his sister who is much smaller and smaller featured is even on bigger prongs.
I am beginning to regret my decision to deliver here and wonder if the care would be better at another hospital. I have even talked to the nurse manager to no avail.
Re: why is everything so difficult?
I was wondering the same thing while I was reading your post. Is there another hospital nearby that you can transfer to? A Children's Hospital or something?
I am so sorry for all the ups and downs you all seem to be having. I keep thinking of you and hoping things are going well.
I have to agree with everyone. I think it may be time for you to push for a transfer. Is there another hospital with a NICU within a few hours range of you? It just really sounds like you aren't happy with their care (rightfully so) and you (and they) deserve better. I'd seriously consider a transfer even if it means you are further from home.
I am so sorry you continue to go through this. (((hugs)))
sorry things continue to be up and down. Andrew had reflux too, and it took awhile to get it under control. We held him upright for 15 - 30 minutes after all the feeds we were there for.
And, I feel you on CPAP - that contraption sucks! Andrew could never hold his peep/pressure - it was always all over the place. I used to complain b/c he wasn't getting "credit" for lower pressure (b/c it was supposed to be set higher, but really wouldn't stay at that). He was soooo much happier when he finally moved to the HFNC. I hope that happens soon for you guys.
I think I remember seeing something that said you were in the Balt/DC area (? maybe?)- it couldn't hurt to investigate other hospitals. I know in the DC area Georgeton, DC Childrens, and Fairfax all are very good (we were at Fairfax.) Let me know if you want any more info. You really seem to have some crazy nurses. We encountered a problem once in awhile, but never like the bs you have been put through.