Emotional Overload

First of all - I'm apologizing in advance for how long this post is probably going to be... I just have a lot on my mind right now regarding my most recent primary (D).

To make his incredibly long history semi-short... he has issues. D was born at 28 4/7. As the days went on, we starting finding out a lot more about him. Chromosomes showed 5-p deletion syndrome. We were never able to figure out completely if he had Cru-de-chat or not because his parents refused any further testing (I'll get to them later...). He had a large PDA and VSD from the moment he was born. He couldn't get indocin because he only has 1 kidney and our docs didn't want to compromise his kidney function. It took us about 3 weeks for us (nurses, docs, everybody involved) to convince his parents that a PDA ligation was in his best interest. (mind you during this time, he got pretty septic w/ MSSA at one point)

So they finally consent to it, and 2 days before it's scheduled, he gets NEC. Thankfully it was caught early (he "just didn't look right to me") and he recovered from that w/o any issues - but it did postpone the PDA ligation. After he recovered from the NEC, he got re-echoed again just to make sure nothing had changed - and it turns out that his PDA went from large to barely there...

It was good that he didn't need surgery - but in many ways, it just confirmed to his parents that "miracles do happen" and that surgery wasn't needed.

So D continued to slowly progress. He finally extubated, spent a couple of weeks on solid NCPAP, and then started cycling between NCPAP and a HFNC. His lungs were never as bad as the support he was needing was making them out to be. It was his VSD that was causing all of the issues.

He cycled between the 2 for just over 8 weeks, until we could finally get him on HFNC continuously.

During this time, we were medically managing him the best that we could. Although we are a level III unit, the only cardiac surgery that we do is PDA ligations. So we were always consulting with the Children's hospital and their cardiologists as to best manage him. He was on Lasix, theo, Zantac, and supplements.

In the second week of January, cardiology decided that they wanted him transfered to the Children's hospital so that they could repair his VSD before he did permanent damage to his heart and lungs. His PPHN was stable at "mild" and they didn't want him to get too unstable to fix the VSD. His due date was just after Christmas, so at this point he was about 2 months old. Originally - all of the docs had been telling the parents that his VSD would need surgical correction due to the size and type that it was, and that they would likely need to fix it about about 6 months of age. However - he was just stuck on so much support, and the way that his echoes were looking - they felt like by fixing it sooner rather than later he would be much better off.

However - D's parents had other plans. They were obviously scared to death about the surgery (I don't know any parent that wouldn't be). However, they refused to acknowledge that this was the only option. No matter what myself, his other primaries, and all of our docs would tell them "they know best because they're his parents"

They would ask us details about the surgery (which we don't perform), and we would tell them to talk to the surgeons that would be performing it - they refused. One of us (primaries) would have a really good talk with them about it, the reasons for doing it now before we miss our window of opportunity... all of that stuff - over and over again. But then the next day it was if nothing had happened.

They would express their frustration that he wasn't getting better (he was stuck on HFNC 5L usually 35-45%... we even had to add Diuril and aldactone). We would express to them the reasons that he wasn't getting better... but it was as if they just didn't get it ... "they know best because they're his parents and we're not". We were holding off PO feeding him (for several reasons). But his Mom insisted that she bottle feed him because "she's his mother and she knows what's best for him". The Dad even said "we'll talk about meeting with cardiology when he starts getting bottles"

I mean come on!!! They even went as far as to tell us that we were "purposely kinking his cannula off so that his oxygen needs would go up and convince them that he needs the surgery"! Seriously.

Well they finally ran out of excuses and we got him transfered to the Children's Hospital the last week of February. We had been echoing him regularly to make sure that he wasn't getting worse (his VSD remained as big as ever, and his PPHN was slowly getting worse little by little)

So Children's echos a few days after he gets there, and finds that his PPHN has blown out of control - too much to fix his VSD. They did a cardiac cath (during which they tried 100% oxygen and nitric), and nothing worse. I'm sure there are more details, but I only get so much information...

His parents then decided that they wanted him extubated and made him a DNR. He remains on HFNC now, on milnirone.

I know that his parents are the only ones that can make decisions for him - but I (and the rest of his medical team here at my unit) just want to shake them and say "this is YOUR fault - you waited too long, and what we warned you would happen if you waited, happened"

Obviously we would never say this to them - but still...

It's just so frustrating. I've been on emotional overload these last 2 weeks. I feel like I let D down - that I (and the rest of his medical team) didn't do everything that we could to give him the best chance possible. I know that given his complex medical history, it was never for sure that by fixing his VSD before he got too sick, that he would be fine. He still had all of the chromosome issues... lots of stuff. His quality of life was always so questionable...

But still. The whole situation still bites big time. I went and visited him yesterday and he actually was having a good day. He was awake and looking around when I got there, looking at both me and his mom.

I just don't know how to feel right now. When you take care of a baby for almost 5 months, it's almost impossible not to get attached. I just feel like we didn't do everything that we could for him and I can't stand feeling this way.

Thanks everybody who finished this marathon post.. I really needed to "vent" about it...