when your kid’s in the hospital

Slizard attacks Birdbot
Originally uploaded by Liz Henry.

Later this afternoon we might be able to go home!

It’s been an ordeal.

If your kid goes in the hospital, please remember:

– write everything down in an organized way. Doctor names, nurse names, medicines with dosage and time. The hospital should pass out some kind of little record book for parents, really. Write down who says what. I think it would have helped if I had re-organized and transcribed my notes every day. But what notes I had were very helpful.

– It is your right and responsibility as a parent to be the advocate for the patient – your child. You are the one who has to look out for their interests, health, and comfort. (The doctors’ job is to have your kid not die or suffer permanent physical damage, and to get you out of the hospital as fast as possible without getting sued.)

– Consider everything you know about the game of “telephone” or “gossip” and principles of communication. Multiply times a million. Your job is to prevent that.

– Make each doctor and each nurse who comes on shift explain to you what they know about the facts of the case. When I do this I find that they often have significant details wrong. You have to know what they think they know, in order for YOU to judge if their judgements are good.

– It does not matter how polite, nice, sympathetic, good bedside manner the doctor has. Do not worry about hurting the nice doctor’s feelings or making them think you are annoying. Make them tell you straight up if they are uncertain about something, and their justifications for doing stuff.

– learn to be quick with your narrative and give only the significant details. It’s hard to figure out what’s significant to a doctor.

– call them on their bullshit when they say stuff that disses your kid – “oh, you know how stubborn/whiny/etc kids can be”. No. Your kid has dignity, and is in pain, and if they are scared, it’s for good reason. That has to be respected, and often you have to remind a doctor of it.

– remember that doctors have tension and power struggles between each other, between departments, nurses, etc. Just stay alert to that. Often there is a lot of bullshit going on. First you have to know it and “name the problem”. Gossip with whoever will gossip with you.

– If something isn’t working and your kid’s freaking, back off for a few minutes and try again. If it isn’t crucial, there is no need to be in a brutal power struggle, especially with an audience of nurses. And that dynamic can develop very quickly.

– look shit up. i know, I have it good with the laptop so I can check on everything.

– call for backup from friends. I should have done this more, because then I would be more effective when “on duty”.

– don’t deny the kid’s pain or try to trick them or say that something won’t hurt when it will. On the other hand don’t reward them for whining. It’s a fine line. Acknowledge that the pain is hard, and that it sucks, and then praise them for dealing with it as well as they are.

– stories of times you were suffering, and then time passed and you got over it, are helpful

– offer your kid lots of minor pain relief/comfort measures. Vaseline their lips. Alternate hot and cold packs. Give them a wet facecloth or a wipe. Anything they can control is especially good.

– fight to minimize chaos, keep everything neat and at hand. establish “now we’re eating… now we’re stopping entertainment and trying to sleep”. again, hard to do in a hospital environment.

That’s it for now. Actually, all this is great to keep in mind for yourself and anyone you know in the hospital. Keep it in mind with elder care, etc. The person who’s sick is usually in no place to think of all this stuff and factor it into decision making. So anyone, child or adult, in a hospital system who has an advocate is very lucky.

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11 Responses to when your kid’s in the hospital

  1. Iris says:

    I'm so relieved for you that it is all nearly over. To reaffirm what you said about the advocate .. when my epidural didn't make any difference to the pain the doctors told me that I was mistaken and .. actually it WAS working .. If my husband hadn't been there and said firmly that I would never fuss about nothing they would not have looked more closely and found that the tube had come out. And all the painkiller was flowing into the sheets.

  2. Meredith says:

    I am so relieved that he is coming home! You have an excellent list here and I intend to use it if LM or B ever has to be in the hospital.I am just so glad that he is ok. I really freaked when I read your last post because the thought of LM or M or any child I know in pain/danger is too much for me these days.

  3. christopher says:

    Having a child in the hospital is a scary experience and you are right on in stating 2 key things… First, YOU are your child's advocate. Not the physician, not the Nurse, not the ancillary staff. These various clinicians all try and intend to be an advocate but the reality is that no one knows your child better than you YOU. Unfortunately, many parents step back when in fact they need to step up.Secondly, not only write everything down, but UNDERSTAND what "it" means. Don't be afraid to ask why or why not XYZ. I can assure you that while preparing to leave the hospital… if it isn't written down, then you might as well accept that it didn't happen.There are a couple of good websites that offer both paper and web-based Personal Health Records (PHR). IT may sound goofy, but when you are in an emergent situation and you've got to remember the last time your child had XYZ or any specific Rx allergies… whew, a PHR is worth its weight in gold.Lastly, if you want a real pain, then imagine dealing with all of the medical bills AFTER you get home?! [this is an honest yet earnest "plug"] – but we are developing a new web app that is gonna help make it 100 times easy to deal with 'em and it will always be free for single users. We're still figuring it all out but we need several "pre-alpha" Users to test it out. If you are interested, then go to http://www.medbillmanager.com. or see blog.medbillmanager.com This is not spam, but rather a plea for help from Moms to get us feedback on something that will help others deal with that pile of paper on the kitchen table called medical bills and insurance EOBs.Happy healing!-ca parks

  4. SJ says:

    Thank you for this. I am knocking on IKEA that I'll never need this advice.

  5. Lisa Hirsch says:

    Also very glad Moomin will be home soon. This posting is so great – you could publish it, you know.

  6. Jenny says:

    I agree- this is fantastic information, Liz. This should be published.

  7. elswhere says:

    Agreeing with all the above–I wish I'd read and printed out and memorized something like this before MG had her tonsils out, and RW and I knew they weren't waiting long enough for the sedative to kick in before they put her under, and she cried and cried. Maybe she would've anyway, but I wish I'd said something.Also, sometimes it's hard to know ahead of time how much something's going to hurt, because they deliberately soft-pedal procedures to parents so the parents don't flip out & then flip the kids out.

  8. bwb says:

    You are so, so right. And this isn't just for kids — everyone needs a hardcore, advocate who will shed all fears of being a bitch and harridan who can stay on top of each medical detail and demand what is right. Like some kind of dakini warrioress who conjures up the lost powers of the matriarchy to slay this particular patriachial dragon. Lets face it- this system was not born of midwives and medicine women.I am often elected for this role by friends and loved ones. I used to work in said environment as part of a 'team' and know just how quickly the actual patient can fall to the bottom of the priority list as the pissing match begins and daily dramas play out on the backs of the patient's comfort and survival.Just a quick story, b/c of petty power struggles, bad admission timing from the ER, new rotations of interns and residents and crappy communication between pulmonology and infectious medicine within the hospital- they almost catherized my husband's heart (he had SARDS)needlessly because the new 'team' wouldn't listen to the new findings from the respiratory therapist and his team. I actually went and interrupted the morning meeting of Doctors (violation of unspoken code — hugely improper), insisted they re-review the chart in front of me (they refused and I refused to leave), and made them write a note that I was forbidding catherization or further intervention and I would call in outside third party for another opinion. Only then did they actually 'listen' and read the notes from the RT. There was no room for me to be 'nice' or gentle in my communication style as that was getting us nowhere but into more and more invasive tests and further and further away from the pulmonology team who ultimately saved my husbands life. It sucks that one has to be such a total bitch immediately alternating with reassurance and nuturing of the ill loved one – while hiding sheer terror — in both cases.Glad you are home. Glad you could muster the warrioress from within and glad you saved your boy!!

  9. Skye says:

    I am keeping this list handy, even though I don't have kids yet.

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