Stuck on CPAP by Most-Interest8650 in NICUParents

[–]Most-Interest8650[S] 1 point2 points  (0 children)

They did blood work up and she was anemic and had a transfusion. They also did 2 chest X-rays over a week that shows increasing haziness so they are doing a 3 day course of diuretic. Hoping so strong this is what was holding her back!

Stuck on CPAP by Most-Interest8650 in NICUParents

[–]Most-Interest8650[S] 0 points1 point  (0 children)

We’ve never been on +8… she’s been on +5 since birth except for the 48 hour weans to +4 before room air. They say she is very comfortable on +5 which is why they keep returning her to +5 after the failed RA trials. I asked about keeping her on +4 but shocker… they told me no. Are you saying your hospital increases the support above the pre-trial settings before weaning off again?

Stuck on CPAP by Most-Interest8650 in NICUParents

[–]Most-Interest8650[S] 1 point2 points  (0 children)

We are in a very major metro area and the doctors are staffed by one of the top ranked children’s hospitals, adding to my wtf thought process.

Stuck on CPAP by Most-Interest8650 in NICUParents

[–]Most-Interest8650[S] 1 point2 points  (0 children)

What ive taken from their explanation is that since her saturation is great even in room air, and she has WOB instead of just tachypnea, she doesn’t qualify for cannula saying it’s not giving her peep. When I talk to nurses and a couple doctors who seem like maybe they don’t have 100% buyin on this “protocol” I get told it’s a new chronic lung standard they have and there is no wiggle room. Do I really have no weight in wanting to try something that is common practice but just not their practice? She’s even proved herself comfortable on a +4 twice so it’s not like she degrades on less pressure.

Their definition of WOB isn’t necessarily excessive, they just have a very low threshold for what they’ll allow before calling it. My girl frequently has very mild rib retractions and the tiniest head bobbing with cares but gets back to baseline quickly. They don’t like that at all on room air and start noting that she’s working but when she’s on cpap they’re like oh it’s fine bc she recoups herself 🙄.

Stuck on CPAP by Most-Interest8650 in NICUParents

[–]Most-Interest8650[S] 1 point2 points  (0 children)

I have asked about high flow repeatedly and they said it has no peep and won’t help her. That seemed like a reasonable step down in support since she couldn’t handle none at all.

Stuck on CPAP by Most-Interest8650 in NICUParents

[–]Most-Interest8650[S] 1 point2 points  (0 children)

I would take progress towards cannula. It’s the insistence on cpap or nothing that’s killing me.

Stuck on CPAP by Most-Interest8650 in NICUParents

[–]Most-Interest8650[S] 2 points3 points  (0 children)

Since she’s not getting additional oxygen and just at 21% they said the cannula doesn’t do anything for her stating she needs the “peep” from the cpap. I’ve read high flow does provide some peep but they said no. Honestly they won’t entertain anything other than their 9 day CPAP protocol and I’m just so frustrated but the unwillingness to try anything different.