Just because ur a dr dosent mean ur good at it!

[LeytonsMom10]

I'm hot hot hot right now! I am sitting in the NICU pump room and need to vent so I don't take my anger out of the people who are caring for my child.

so when I called the NICU this morning to check on my son I was told that he had 10 bradys overnight... When I asked how bad they were the nurse ol me they were pretty bad. The dr and nurse pract had already seen him so I told her I would be in and would like to talk with them. We were under the impression that my son was only having 3-5 in a 24 hour period and now he had 10 in 12 hours. We were concerned. When we got here the nurse called the np who came in. This was our first time to meet her in our 4 week stay. She basically didn't know anything about our son, couldn't tell us why thi was happening, all the told was the labs from a few weeks ago. She was asking us what his echo results were and like always we were told the very minimum. I became beyond frusturated and asked if I could get a copy or access to my sons chart. They said no copy but I could look at it on the computer screen. Fine by me I sat my happy butt down and copied word for word his bradys, all 27 days of them if they arnt going to give me a copy I'll make one of my own!

The most iritating part is that everyone is so inconsistant no one is one te same page. I ask the same question to 10 different people and get 10 different answers. So now I have taken it upon myself to make sure I know EVERYTHING about my sons care because obviously they don't.

Anyone else have the same problem. I know there are frusturated moms that have bern through this! Give me your advice!

[liz-hippymom]

i am in the same boat! been here for 5 weeks and i am tired of getting a differnt story from everyone who opens our curtain. i am also tired of never getting any say in anything about my daughter care. i cant even ut lotion on her dry, flaking skin for goodness sake!

i am just praying to get her out this week, before i lose my mind!

[Phoenix~Mama]

s to both of you

I have no advice, but am there too. Most people at my NICU are on the same page, sort of... they all just have a different intpretation of what that means for DS's care. Some nurses are nazis, others are really sweet and are willing to fudge the system and teach me tricks to get DS home sooner.

But yes, the not really having a say in care is insanity!!! It took awhile before a nurse would even let me put DS back in his incubator, and then it depended on the nurse. He has been out for awhile in a bassinet now, so I can do it whenever, but geez! Like I can't pick up my own baby?

[~bookcase~]

sorry to say i remember it like yesterday, despite my twins being 2 now!!!!
we're still under their care with one child for slow weight gain and every appointment/ letter/ phonecall i feel like i did needing permission to do anything with them there.

it's the pits.

i hope one day research prevails and we get proper care.

[MeepyCat]

On the "no copy" thing - BS. Seriously. Under HIPPA, you are legally entitled to a copy of your (or your children's) medical records.

I would be willing to play a bit of a dominance game here - say something like "Every time I speak to another doctor, I am asked to summarize the results of previous testing that should be in my child's chart. I do not understand why the staff assigned to my child is not already familiar with this material, but as it appears they are not, I will be requiring that paper copies of all of my child's test results and other records be provided to me daily. We should not be the repository of our child's information for the medical staff, but since we are, we will not risk compromising quality of care by playing a game of telephone with his test results."

And then every time a doctor asks you a question like "what were his echo results," your answer is either to show them the records you have copies of, or to say "Please pull the results from his chart so that we can discuss them."

Seriously. Stomp these people. Stomp them hard. I am all in favor of having good relationships with the NICU staff, but they have to do their jobs.

[justKate]

Originally Posted by MeepyCat

Seriously. Stomp these people. Stomp them hard. I am all in favor of having good relationships with the NICU staff, but they have to do their jobs.

Our strategy was to be wonderful to the NICU nurses and hammer the docs. Because (no offense to anyone, I hope) the docs are in the business of having patients. So what do they care if your DC is released? They know that the child is "safe" in the NICU, so why would they be in a hurry to release them? Once the child's released, if something goes wrong their first thought will be liability ($$). If you happen to be at a teaching hospital, maybe there's a resident that you could get on your side? They know which docs will go for what, and can work wonders.

Be there when the docs do rounds, and don't let them go until you're satisfied that you have the answers you want. BE THAT MAMA BEAR. It sucks to say it, but the squeaky wheel does get the oil.

There should also be a social worker on staff--if you can't make progress yourself, go through him/her. Tell them that "Nurse X told me I can't see DC's medical record...."

You can also try "good cop bad cop," if you have a partner. Let the partner be the good cop.

I'm so sorry you're going through this mama. I hope it gets better really soon.

[Amys1st]

Do you have a charge nurse? Also only talk to your attending and your charge nurse. I noticed when we stopped talking to everyone about our dd's care and ONLY our charge nurse and Dr that was our attending that month, it was much easier and everyone was on the same page. But it took going thru what you're going thru right now to arrive at that. Its VERY frustratating...

[aramat]

We had the same problem. After the first week, we found our own pediatrician who would visit our preemie in the hospital, give us advice, and reason with the hospital doctors for us. This helped, but dealing with individual nurses and their inconsistent ideas still kept me red-hot for the rest of baby's stay. It's a hard time. Hugs to you!

[larels]

Hi, I am so sorry you have to go through this frustration...having a baby in the NICU is hard enough without the extra stress of not trusting the providers or getting mixed messages! I read your post with what is likely a very different perspective from most others, as I am a NNP. I have been a NICU nurse for 6 yrs and a NNP for 1.
As far as different messages/ideas from nurses, I know that this is frustrating for parents, nurses and others on the healthcare team. NICU nurses come from many different educational and professional backgrounds. There are still practices that are not evidence based that have hung around for decades, there are nurses who are much less touchy-feely who seem like they want to disempower parents, and there is a very wide range of knowledge re: infant pathophysiology. This can be frustrating, but it might help to think of nurses as a diverse group of people who bring different skills and knowledge to the care of the infant. Sometimes the gritty old nurses who are scary to the novice nurses have a lot to teach regarding care of the sickest babies.
As far as the medical team goes, I know this can be challenging for me. Sometimes I might be caring for 4-10 new babies for just a day, or maybe 20+ babies overnight with just 45 minutes or so of report on all of them. Parents might expect me to know everything about their baby because I am their first point of contact, but this can be pretty difficult (despite my utmost desire to answer their questions, reassure them, etc). In the NICU I work in, we keep a continuously updated document on each baby that gets printed out with each handoff to a new provider. I can refer to this to see what the last ECHO or CBC showed. If I can't find an answer to a question there, I read the progress notes and consults. If I can't find anything there, I differ to the fellow, attending or primary NNP or resident (who will be back the next morning, most likely). Truthfully, parents deserve better. Sadly, we providers in the NICU are usually running every minute of the day, trying to keep the babes alive or healthy and a lot of the time, communication with families really suffers.
What would I suggest to you? I'll tell you what I have seen work:
-let the NICU social worker (or whichever social worker is available) know about the difficulties you are having. They can often communicate your needs to the NICU team and facilitate improved communication.
-setup either a one time or standing meeting, if needed, with either the primary doc/NP or attending (whoever is directly involved in baby's care and knows him best.
I've never been in your position, but I can only begin to imagine the frustrations. As far as hammering the docs or stomping them or playing good cop/bad cop, I don't know. I think that even if providers aren't living up to your (justified) expectations, maintaining mutual respect between providers and families works out better in the end. I am willing to bet that, pretty much nearly all the time, pretty much all the people in that NICU (parents, nurses, NP's, RT's, residents, attendings, etc.) are trying to do what's best for the babies. I am always glad to see parents who are strong advocates for their babies...I know the baby is going home to a good family. I don't think that advocacy necessitates game playing or hateful behavior towards providers.
Best wishes to you and your son and to all the other mamas and babes going through the NICU rollercoaster. May your babies get home where they belong soon!

[LeytonsMom10]

larels... thank you for your response. It is always nice to hear the "other" side of any situation. I understnad that your job is hard, I get that. But reality is the NNP and Dr are incharge of care changes for my child and we as parents, who do not have the education or expierence in theses situation, depend on the nnp and dr to know what is best for our child and when the trust is broken then I no longer have the condifence in nnp and dr ability to care for my child. I know that nnp and dr have ALOT of babies to care for and in our case we can have 45 babies in our NICU, but I have had nnp that were great and KNEW my child's history and what was going on so I know it can happen. Honestly if nnp can't handle it then maybe they should choose a different hospital to care at or maybe a different profession. I know everyone is working hard and has my child's best interst in hand but I still think as a professional you need to be able to communicate with the parents of the child and saying "I don't know" over and over does not cut it. YOU NEEDTO KNOW THATS YOUR JOB!

In our expierence that drove me to this post our nnp could have said, "we noticed he had more than an normal amount of bradys for him and we are watching it. We don't know why it happened but we have ruled out equipment failuar, infection and will just contiune to observe him". I get that my kid will have bradys... but I need to know that the professionals that are suppose to be caring for my child are paying attention to him. The worst thing you could do to a NICU parent is so lack of knowledge and confidence.

Thanks again for your post... sorry if this response is hostile. I still have some anger from this that I am trying to work through. We have esculated this to higher ups and it will be discussed with someone of authority.

[MeepyCat]

Larels, I hear you about the difficulty of keeping up with however many babies and knowing everything there is to know about them, and fundamentally, I think that the problem is understaffing. This isn't the nurses' fault, but it is a huge problem.

I also think that it's a huge problem with doctors ask parents to recap test results and prior conversations with other doctors. There are a few reasons I think that, but the big one is that it is *known* that people under stress are not good at processing and retaining information. The first few days my daughter was in the NICU, I was on narcotic pain medication. I was not qualified to summarize the findings of my child's echocardiogram. Even if I'd been completely clear-headed, I was busy processing that OMG, that baby - that one, the tiny one with all the tubes running in and out and the breathing apparatus, and the bili lights - I had that baby.

So I think it's very reasonable for parents to push back. Demand to see the records. Tell the doctors to pull and review the test results. Put the responsibility for patient care on the people who are responsible for patient care, instead of flailing to bridge a gap with information you may or may not have a good understanding of.

While I sympathize with other points of view, I also have the experience that after I became a demanding patient, our NICU experience improved. It was amazing. I went from dithering anxiously in response to questions several times a day, constantly fearing that important facts were getting lost and that my daughter would suffer as a result, to getting and giving clear answers. Were the doctors necessarily happy with me? Probably not. Did I care? Heck no. Believe me, I tried being nice first, and I eventually concluded that, in order to help my DD in the situation, I needed to be a little mean.

[larels]

LeytonsMom, I guess it sounded like I was defending the repeated "I don't know" answers that you were getting. I certainly wasn't, though I tried to shed some light on the inconsistencies seen my you and other posters b/w staff in NICU's as well as the near impossibility of knowing every detail of each baby's history.
That being said, I also detailed what I do when I don't know the answer: dig through records, defer to other providers, etc. "I don't know" should always be followed by " but I will find out for you" or "but we should have more information after X results come back", etc.
In your son's case w/ increased bradies, you are totally right about the answer you should have received...bradies are a common issue in the NICU and discussing his change in status, reviewing possible causes and outlining the current plan of care is pretty basic. You definitely deserved better.

MeepyCat, I agree that parents shouldn't be relaying results to providers...again, I described the means of communication used in our unit in my first post. And certainly, parents have the right to review medical records and review results with providers. I think it helps parents to look at their baby's chest x-ray or see their labs over the last few days and get a good explaination from the provider of what they mean.

I have seen thousands of families come through multiple NICU's and really, the methods I mentioned of utilizing social workers or arranging for a regular meeting have been great ways for families to improve their communication with the medical/nursing teams without having to resort to vindictive means of getting what they need.