August 23, 2016

Even More Battles - Diuretics and Doctor's Egos

Just when you thought the battles are over, they only continue... (and will probably never stop)

It's incredibly frustrating to have different Neonatologists constantly switching each other out. I understand why it happens; doctors can't be living in the NICU 24/7/365. But on the other hand, because said doctors have a home to go to each night, wouldn't it make sense to stick to the plan established by the previous doctor if it's working well?

I don't understand the mindset of most of these doctors. It's as if their own personal egos and opinions get in the way of the individual child they are caring for. They have little regard for what the previous doctor set up. And instead of reading notes and the patient's history, they just look at the past day and willy-nilly go from there.

For a perfect example of this, let me begin telling you of our battle of the week:

Aiden has been doing fantastic. Truly. He hasn't needed a PRN sedative in nearly a month, his oxygen needs have been consistently low (his sweet spot is 30%), and he has been having less desat and bradycardia spells. He handles his c-collar being put on and off all day, with him frequently being moved to and from his bed as well. He has been happy, content, and for the first time since he was born, behaving like a normal baby. He still passes out when he poops - but that's something that seems fairly common with kids that have SEDc. And he can recover himself after passing out without needing extra help. Our primary nurses know him so well that as he bears down and turns purple, they don't turn up his oxygen or give him manual breaths. They know that he'll bear down, pass out, poop, then pops his eyes open and will come right back. For him this is amazing.

We had made a plan with his medical team that we were going to let him be. "No changes is a good change" was our motto. Because he is finally happy and comfortable, we want to keep him that way so that he may continue to grow and be healthy.

But alas, that medical team switched out for the next rotation of doctors. Our previous Neonatologist wrote in his chart that we weren't going to make any changes at this time. So naturally you would think we would continue the same course of action - right? ...RIGHT???? Wrong. 

This new doc walked in and basically said, "Oh, let's stop his diuretics.". And just like that, took my diuretic-dependent-since-day-one, five month old baby completely off his Lasixs. Didn't wean it slowly, didn't even cut the dose in half first, just put a complete stop to it. 

I have two big problems with this.

First - it was clearly written in his chart that we were going to continue his "no changes is a good change" plan. Is your ego and personal ideals really worth more then following that? Obviously.

And second - we have already tried taking him off diuretics three times in the past, and all three of those times lead to a whole slew of other problems. One of the times they tried that, it almost killed him. 

If you bothered doing some research on my child before walking to his bedside, you would have found evidence of that. Maybe it would have led you to think about trying to wean a little of his dosage first and see what he did. Or maybe if you bothered reading his chart, you would have seen that our plan was no changes for the next little bit so that we may continue to promote healthy lung growth. But no, this doctor waltzed in and didn't bother taking a look at any of that. Or maybe he did, and just didn't care? Either way, that's a big no-no in my book. Either situation, and the result points to the same conclusion. It shows a general lack of care and concern for my baby - and you need to get over yourself.

So when David and I found out this happened, we protested. The doctor argued Lasixs has side affects that mess up your potassium and sodium levels. We argued back that we'd much rather focus on lung development and supplement potassium and sodium with meds. After all, a big reason he needs diuretics is because he doesn't have healthy lungs. Breathing is much more important then low sodium levels - especially when you can easily make up for low sodium in other ways. But the doc insisted on giving it a try.

So Aiden got super puffy again. His oxygen needs went up into the 50's, he was uncomfortable, his ventilator support was going higher, and he was starting to have more desat spells as well. All because he was retaining fluid and his lungs were getting wet. After a few days of back and forth, I finally called the doctor to his bedside, looked him straight in the eye, and said, "I'm not asking you, I am telling you to give him his Lasix back. We are following the same exact path when we tried taking him off diuretics before, and I'm not going to risk losing him again because of it." His response to me? "Oh? We tried doing this before...?" 

...have we tried doing this before?! So you mean to tell me that you are a few days into your rotation, and you STILL haven't read my child's chart or history? Believe me, this is one example, but it's quite a novel theme around there.

He agreed to give Aiden his Lasix back after that, but only on half the does he had before. It helped a little, his vent needs went down slightly, and his oxygen dipped a tiny bit. But he still had wet lungs and was hugely puffy.

The next day was David's turn at the hospital, and he went in geared up for a fight. But he quickly found out it was that doctor's last day for his shift. It was very obvious to David and I at this point that this specific doctor had very little regard for our requests, opinions, and our child's needs. So we let it be for the day, and we returned the next day ready to fight with the next doctor about Aiden's diuretics.

However, much to our delight, the first thing this new Neonatologist did was take one look at Aiden and his chart, and said, "Wow, uhm... why did we get rid of Lasixs? He's dependent on it, he has lung problems!", and ordered for him to get his full dose of Lasix back. Amen.

Everyone that works in the NICU or has experienced the NICU will probably echo the same theme; "it's a rollercoaster ride". And it certainly is. You experience consistent ups and downs, and you never know what to expect when you walk into your baby's room. Each time you make a little progress forward, you will also take a few steps back. 

Certainly the NICU rollercoaster is largely dependent upon the health of the baby, but when you've been at the NICU for as long as we have, you start to notice that the rollercoaster is rarely started by the baby. It's doctors and NPs that don't pay attention to details and rely on their own opinion rather than the individual needs of the child. And when the life of that child is in your hands, you better look at every detail and leave your arrogance at the door. 

I understand that this doctor was concerned for Aiden and the side affects his diuretics present. I don't understand having so much pride in yourself that you can't see past your own nose and hear the countless nurses that tell you he needs it, or the parents that question why we aren't focusing on lung growth first. If you can't listen and see what that child truly needs, then maybe you are in the wrong field.

It's interesting, the PR people at Primary Children's Hospital try to make you feel real warm and fuzzy about "the hospital on the mountainside". And we are blessed to have some fantastic resources there with some equally fantastic doctors. But they also have a lot of issues they don't like to mention, and their NICU is ran very sloppily. Another doctor actually said to David's face once, "You have to remember who the medical professionals here are." You may be a doctor, but I am his parent and have spent every single day by his bedside. If you feel like you need to waive your degree in my face and insult me when we are telling you something needs to change, then there are greater issues that need to be addressed. And much to these doctors surprise - every time David and I have been right. It just takes for Aiden to be near death for those doctors to drop their ego and do something for him.

Recently when talking to the manager of nursing about a few concerns we had, she told us, "You are one of the savviest set of parent's we've ever had at the NICU. Nothing gets past you two." - and you better believe it! It won't continue to get past us either. Looking back, I can honestly say at least half of the issues Aiden has had were not caused immediately by his own health, they were created by the doctors and NPs. It makes me wonder how much further along we would be in his care if they stopped treating him like a medical experiment.


  1. My mother-in-law is a NICU nurse at the U.
    I have told her a bit about Aiden and your struggles. She agrees, the doctors have egos and can be A$$es.
    But they actually have a meeting every couple weeks that requires all doctors to be present and they go over each file together to make sure they're all on the same page with the patients there.
    I wonder if PCH has meetings with all doctors present from the NICU?
    Keep standing up for yourself and your child- you're doing great and the best things for him!
    *by the way, that pic above with his tongue out is SO stinkin' cute!

    1. Thank you Trisha! They do have those meetings. But I think that only points out more issues internally. We've had a small handful of docs that follow the course of action, but the majority disregard everything and go with their own plan.

      So this makes me believe that either something is missing in the NICU policies and procedures, or that there needs to be stronger accountability for doctors that abandon the treatment plan. Or maybe there even needs to be stricter guidelines about how much of a patient history you give in these meetings, and what details you give.

      Obviously something is lacking somewhere and it's frustrating. But the good thing is through our frustration, and all things considered, Aiden is doing great!

      Thanks for your love and concern. I've heard great things about the NICU at the U. And as I always say, NICU nurses are truly angels, and it means so much to David and I to have them by our side and advocating with us. Your MIL is a special person for being one!

  2. Ugh! I am so sorry. There have been many time where I have had to bring up that we had tried something for Emily and they had no clue. Dr Fung and Dr ling are the only two who have had Emily since birth and actually listen to me. Hopefully it's not one of them that did this to your LO. We are headed to SD on the 7th.

    1. Thankfully, no! Dr. Fung and Dr. Ling are our favorite docs there. They are the embodiment of how a neonatologist should be!

      They still haven't given us a date for SD. David and I are still fighting them on transferring there too. It's just so far away and Aiden needs a different type of care. But congrats to you guys - one step closer to home, and you are getting away from PCH!!!

  3. Corissa
    Would it be ok if I share your stories with some managers at work?
    I admire you so much!