Feeling they’re giving up on us

Feel they’re giving up on us

My son was born at 25+1, he’s currently 38+3 and has had a super rocky journey so I’ll give a bit of background

He was born with duodenal atresia and a massive PDA, both requiring surgeries. Due to the atresia he couldn’t have milk so was on TPN for the first 11 weeks of his life and with the PDA he’s been ventilated by SIMV. He had his PDA ligation on the 25th June then his duodenal atresia operation on the 2nd July (the following week) and then returned to the NICU.

From a feeding point of view, he’s now on full feeds every 3 hours via and NG tube and coping really well

From a ventilation point of view he needed more oxygen when he got back to the NICU due to a partial lung collapse on the journey, he got to 100% oxygen but was still saturating fine and was on a lot of sedation. The doctors ended up putting him on nitric and it helped reduce his requirement to 40-50%, they also gave him a course of steroids (DART) at the same time. He came off the nitric and his oxygen remained lower, he’s been triggering over the vent and has been over ventilated on his gases.

They have tried to extubate him twice of the next 2 weeks both being unsuccessful. The first time the nurses hasn’t prepared his Optiflow or the Neopuff so when the tube came out his sats dropped and they reintubated. The second time they tried him on NIPPI and he was furious, spend 1.5hours fighting the mask and pulling it off every chance he got, half of the time not having the mask completely on, so they reintubated. It’s been a week since then and the consultants have said his pressures are in a good place, his oxygen isn’t too bad and they would consider trying again, unfortunately he’s picked up an infection now so they obviously don’t want to do anything until he’s better (however the plan was to be to attempt extubation Monday just gone).

A new consultant came on and has just been so negative. The first thing they said was that we’ll need to move hospitals because he’ll still be vented at 44 weeks (in 5 weeks time). Then today she said he was spoken about by all the consultants and will come up with a plan. She sat us down and the first thing she said after this meeting was ‘term babies who are ventilated are likely to not make it home, and to die on the ventilator’

We thought she was going to have a plan but that is how it started. Of course we know that’s a possibility, it’s been a possibility since he was born so I’m unsure why they’re highlighting it now. I asked if clinically he has gotten worse since last week and that’s why we’re having this discussion, she said if anything his xray looks better, his pressures are better, he’s triggering more and he’s on less sedative, so then it worries me that rhe potential for him dying is the first thing she brings up? I’m concerned they’re not actually seeing the progress or seeing him as an individual. Yes he has been ventilated for 13 weeks, but I worry they aren’t taking into account that 6 weeks of that we were waiting for his PDA ligation to help him get off the vent, so he wasn’t being pushed, he was just being maintained, and he’s only just had that operation followed by another one and only had 2 weeks to cover from his latest surgery

I don’t know what I’m after here, maybe just some support? Or if anyone has been in a similar situation? They want to try him on NIPPI again if they do try but I’ve explained he hated that mask

I just worry he’s being given up on and I don’t know what to do because each day he makes a bit more progress in the right direction

Edit: they’re trying again today, they’re going to try him on optiflow first, then if he struggles the NIPPV and then re intubate if needed. We’re really nervous but hoping he can hold out