Emotional Overload

[Sweeper933]

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...

[BittyBabyGrower, MSN, RN]

I hate stuff like that, and sorry you are going thru it. We have lots of parents we want to shake, but you have to grin and bear it sometimes, no matter what it is, because ignorant people will always be that and unfortunately, the baby is the ultimate loser.

[EricJRN, MSN, RN]

We're so sorry to read about this, Sweeper. Our primaries can drive us nuts faster than any other baby. Outside of the fact that we develop ongoing relationships with them, kids that get primaried are often so much sicker than the rest.

We discussed the guilt issue on another forum related to suicide prevention. Sometimes the guilt may actually protect us from a truth that is tough to admit: there are some babies (families, etc) that we just can't help. Sometimes stubbornness, denial, clinical complexity and general bad luck all come together on the same patient - and the baby pays the price no matter how efficiently we respond.

You're in our thoughts in the coming days as the outcome unfolds. This little guy is no doubt blessed to have a nurse that cares so much about his comfort.

[Sweeper933]

I know there are some babies that we just can't help. It's just the way our job goes sometimes. It just sucks knowing that he may have had a better chance if his parents had made different decisions. It's hard for myself and his other primaries not to want to blame the parents for this whole thing. All along, we have suspected that deep down, his parents didn't want him to survive. They're both in their mid 40's (their son and daughter are 12 and 9 - D was a "surprise"). They wanted a "perfect, healthy" baby, and D was never going to be that. They always believed that "god would give them their miracle" and that everything would be fine.

Sigh.

[Imafloat, BSN, RN]

Sweeper,

I am sorry to read what you are going through. I can see why you are frustrated and sad. Poor baby. It is obvious that you are very caring and love D. One of the hardest part of our jobs is falling in love with these kids and then standing by, powerless to help them.

I recently went through a situation then I knew was futile from close to the beginning. The parents couldn't see that, they kept wanting everything done, I think the baby suffered tremendously, he would get a look of terror in his eyes when we would do his treatments. He lived 6 months.

It's hard to stand by and follow orders that go against your caring nature. It is one of those crappy parts of our job. If it's any consolation, know that while that baby was going through everything, s/he could feel the love and care you had for him/her from your presence and gentle touch. You can't change the parents choices or their thought process, it will only hurt you more to try and figure out what the heck they were thinking.

Take care of yourself through this difficult time.

[RainDreamer, BSN, RN]

((((HUGS)))) for you. What a tough situation, and I'm so sorry you're having to go through this.

It's so frustrating dealing with parents like this. But like you said, you never know "what coulda been" .... even if he woulda had the surgery in time. It's all the "what coulda happened"s and "if only"s that can seriously DRIVE US INSANE!

I wish peace for you all.

[akcarmean, LPN]

((((((Sweeper))))))

I understand your frustration. my first born was a 28 wker. Thank God for nurses like you. We were very lucky.

I would feel the same way please dont bury yourself with the "what if's" and "if we could have done this in time". You did your best and poured your heart and soul into baby D. Your time and efforts are appreciated here.

My thoughts and prayers go out to your for as long as you need then in the days, weeks, and months to come. It is ok to grieve. It's hard not to get attached.

take care

keep us posted

we are here for you